Jamboree Recipients 1998-2019
My name is Blake Payette. I am 12 years old and in grade 7 at NACI
I live with my brother Cody and my mom Melissa in Neepawa, MB.
I have Microcephaly which means that I some fluid on my brain which is smaller in size than average, it affects my motor skills and I am also non commutative. I do walk but sometimes I need assistance so I wear A.F.O's which help keep my legs straight. I also have a special stroller that can be attached to my brother’s wheelchair and my Mom can take us both for walks.
I love doing anything water related like swimming, splashing and helping my mom do the dishes, I also love music and playing with my friends at school
Thank you for sponsoring me I am honoured to be a part of the Little Valley Jamboree Family.
Ella is a 1.5 year old little girl from Rivers, MB. Ella has a rare genetic condition known as Kabuki Syndrome. Kabuki Syndrome affects 1 in 32,000 individuals globally, and affects each person differently. In Ella’s case she was born with a critical congenital heart defect where the left half of her heart did not develop as it should. Hypoplastic Left Heart Syndrome has no cure, and is a fatal heart defect if not surgically treated.
When Ella was 12 hours old she was life-flighted to Edmonton’s Stollery Children’s Hospital where she underwent her first open heart surgery at 8 days old. Due to complications after surgery Ella was placed on ECMO, a life support machine, for 2.5 days and experienced mini strokes. Ella also developed an infection from having her skin and chest open for 11 days while recovering from her heart surgery. Ella battled infections, arrhythmias, and developed Pulmonary Hypertension which required high respiratory support for months post surgery. Because of all this, Ella remained inpatient in Edmonton until her second open heart surgery at 4.5 months old.
Ella’s second open heart surgery went much smoother, and she was able to come home for the first time at 6 months old on 24/7 oxygen and tube feeds. After 4 months being home Ella was able to wean from her oxygen, and a few months after that, Ella was weaned from her feeding tube by hiring a weaning company from the U.S.A, Growing Independent Eaters. Ella enjoyed her first days as an oral eater shortly after turning 1.
Along Ella’s journey we have discovered other underlying medical conditions aside from her heart, caused by Kabuki Syndrome. Some conditions Ella also warriors are seizures, kidney disease, and hip dysplasia.
Ella sees many specialists and therapies, and often times this means overnight stays in Winnipeg and missed work. The money raised will help offset these costs, as well as help cover the multiple medications Ella takes daily. Her Pulmonary Hypertension and seizure meds in particular are quite expensive, and cost more than a few hundred dollars each month.
Despite Ella’s medical complexities, she loves life and is becoming a bright little girl. She works hard on her physical therapy and enjoys intentional play with her parents. Ella’s parents work hard on giving her a good quality of life, and strive to give her the opportunities she needs to continue to strengthen and grow.
Laina Boyd- Onanole,MB
Laina is a happy, energetic six year old who adores her two older brothers, Hudson and Rohen, and enjoys going to Kindergarten at Onanole School.
Laina had a complicated birth but all the medical professionals believed she would grow and develop normally. As Laina grew, it became evident that she wasn’t achieving the typical developmental milestones. With the help of our family doctor, and the neurologist at the Child Development Clinic, Laina was eventually diagnosed with a Global Developmental Delay. Luckily for Laina she has a committed team of doctors, educators and therapists, whose support to Laina and our family has been invaluable.
For Laina, there are several aspects of her life that are affected by the Developmental Delay.
The most significant is her cognitive ability - her capacity to reason, organize, and understand the world around her. One of Laina’s major difficulties is navigating social situations, and understanding expected behaviour. Her gross motor and fine motor skills are also delayed, due to hypermobile joints and weak muscle tone. Laina learned to walk a few months after her second birthday and still struggles with things like climbing stairs and balance. Laina has learned to use scissors and colour in the lines (sort of!) and is working on writing the letters of her name. Her communication is limited, but with the help of speech therapy it is expanding all the time. Laina uses simple phrases to express her needs and tell you all about her day.
The future for Laina feels limitless and limited all at once, so mostly we focus on the today and how we can do our best for her in the moment. We are interested in providing therapies that help Laina better manage the challenges of her day-to-day life, like interacting with her peers, attending to school work, and being able to express her frustrations and needs in gentle ways. With the kind support of Little Valley Jamboree we would like to explore some alternative programs, such as Equine Assisted Learning and Music Therapy.
At this moment, Laina is a busy girl who likes to sing along to Twisted Sister and Queen, play toys with her brothers, toboggan down any hill she can find, and cuddle up on the couch with a pile of books. Ultimately, Laina’s joy and determination are the gifts she shares with us and all the people she meets.
Kristel and Derek Boyd
Brigham McNabb- Winnipeg,MB
Meet Brigham Neil McNabb. Brigham was born a healthy boy November 9, 2013 to Marly McNabb-Abel and Brennan McNabb. He is now 4 years old. He is energetic, curious, loving, inspirational, and continues to amaze his family with his approach to life. He is a fun little brother to his two big sisters Fallyne and Hustyn. He lives with his family in Winnipeg but gets to visit his great grandmas, great aunts, great uncles and large extended family on their farms in Minnedosa and surrounding areas. He is fascinated with the big tractors and machines that he sees and hears when he visits but nothing compares to the excitement Brigham has when someone takes him for a ride on one.
Brigham was a very happy, smiley baby and he took interest in observing the big world around him. It was only when he was becoming a toddler is when he didn't seem to be reaching so called normal milestones. Brigham would choke on foods and fluids. He had no language skills yet at the age of two (sign language was introduced). His gross motor skills were slow; he could not feed himself, couldn't make his fingers work to sign, or even play with toys as you might expect a young boy to do. He didn’t start walking until he was 23 months, and even when he did his gait was very weak and unstable. With these concerns, and after many discussions with family, his mom began a long process of trying to find him answers. In November 2016, at 3 years of age, Brigham received a diagnosis of Global Developmental Delay.
This diagnosis started his journey in finding out if there was anything medically causing his delays. After several specialist visits, an MRI, and blood work, the geneticist gave him a definite diagnosis of 17q12 micro duplication, a rare genetic disorder, in the summer of 2017. Other findings included, his cerebellum appears to have developed fully but abnormally and he has cysts on his brain. At this time it is unsure if the unusual appearance of his cerebellum could be a contributing reason for his muscle tone weakness, so this will be monitored by his neurosurgeon. His motor delays make him vulnerable to injury while participating in normal everyday activities, which you’d forget was an issue from the powerful hugs Brigham gives. 17q12 micro duplication has caused Brigham’s intellectual and learning delays, causing poor speech, gross motor (walking, jumping, catching a ball, etc) and fine motor skills (holding, eating, buttoning clothing, etc) Concerns are still the possibilities of seizures, behavioural and psychiatric conditions, abnormalities in his eyes, heart, kidney and brain that may and could still present in Brigham’s health to add to more complications and diagnoses. These concerning abnormalities of 17q12 micro duplication can have a range of unpredictable outcomes and developmental challenges.
Brigham is fortunate to have a great team of therapists, doctors and specialists that are taking every factor into consideration through the Children’s Rehabilitation Centre in Winnipeg. More tests are in Brigham’s near future as we learn more about this rare disorder. Language,motor, and competent skills are our main focuses as he approaches his time to go to kindergarten. Brigham would benefit from weekly visits to his speech therapist to address his language needs so he is able to communicate his wants and needs more affectively. As well as more visits to his physio and occupational therapist for motor skill development. Unfortunately, these therapies are only offered once a month through Children’s Rehab, and private therapy is extremely costly.
Brigham loves his sisters and family unconditionally and welcomes everyone he sees with a loud HI! Brigham enjoys being outside and would benefit from having a safe place for him and his sisters to play together practicing his climbing, balancing, bike riding, jumping, and other favourite activities like swimming and swinging. Brigham needs a support worker with him for extracurricular activities, we would love to look into getting him a one on one who can do these activities with him to help establish more balance for all family members.
Written by Marly Abel-McNabb(Mom)
Brody Hall- Winnipeg,MB
Brody was born in Winnipeg, MB in September of 2015, making Brody 2.5 years old now. At the time of birth Brody was born with no major complications. On Brody's ninth day of life, our family’s life took an unexpected turn. Brody was admitted to the Children's Hospital because of breathing distress, change in skin tone and disinterest in feeding. The following morning a code blue was called and he was intubated and transferred to the PICU where he fought for his life. Brody had over 55 seizures within 6 days, and was hooked up to endless tubes, wires and monitors; all of which, were keeping him alive but in an induced coma. Our brave Brody eventually weaned off of all of the support and started breathing on his own. We were told that Brody was a child that would not see, talk, walk, eat on his own, and would be fully dependent on us for all of his needs. Well...we are delighted, proud and happy to say that Brody has and continues to blow us away! Brody happens to be diagnosed with Cortical Visual Impairment (cortical blindness), Cystic Leukomalacia, Microcephaly, seizures and Global Developmental Delay. Despite all of these challenges; Brody interacts, Brody eats solid foods, Brody has started taking his first steps, Brody loves bashing into things with his walker, Brody loves his sister, Brody is silly, Brody understands simple requests, Brody babbles, Brody belly laughs and he even nods yes or no! Yes, Brody is still dependent on us for all of his needs but he is his own little person with a big personality.
Brody thrives on movement and is happiest when he is “on the go”, whether that be on his ride on toy, his walker or holding our hands. We are currently in the process of getting Brody an adapted bike made to fit his needs. This will help Brody feel a bit more independent and help him with his gross motor skills. We are aware that as Brody grows, special equipment will continuously need to be purchased. This certainly puts an extra strain on our family but seeing Brody move is truly a miracle.
It is no doubt that all of Brody's professional supports have helped him make these incredible gains in his short life so far. Brody is followed by pediatric neurology, ophthalmology, orthotics, occupational therapy, physical therapy, speech language pathology, Canadian National Institute for the Blind (CNIB), Society for Manitobans with Disabilities (SMD), child development, Specialized Services for Children and Youth (SSCY) and has a full time one-on-one worker at daycare. We feel blessed to have such a large team working with us and rooting for Brody. We like to think that it's Brody's killer smile that keeps them coming.
At one year old Brody participated in Anat Baniel Method for about one year; however, had to stop due to the high cost. We hope to one day have Brody seek out this therapy again. Brody continues to participate in Conductive Education at the Movement Centre, in which we believe has helped Brody the most. Brody learned to pull to stand at the Movement Centre, allow hand-over- hand movement while feeding with utensils and has even took his first steps into independence while there, we can't wait to see what else he accomplishes.
Our hope is to continue to give Brody as many opportunities as financially possible to help him be his best self- through private therapy, specialized equipment and technology, communication devices and even the best medications for seizure control. We are thrilled to have been chosen by the Little Valley Jamboree for sponsorship. We have definitely learned that it takes a village to raise a child and are blessed to have such an amazing support of people surrounding us. We know that we have a long journey ahead, and this gives us comfort in knowing that as Brody's needs change through his lifespan, we are not alone.
Michelle, Dan, Madilyn & Brody Hall
Alexis Andreychuk - Erickson, MB
Alexis was born in April of 2012. She lives in Erickson with her parents Toni & Ryan and her big brother Noah. She attends Kiddie Kollege in Erickson.
As a baby Alexis met all of her milestones aside from speech. As she approached age 2 and had no words and very little appropriate babble sounds she began speech therapy where it was discovered she had hearing issues and had two different ear tube surgeries which corrected her hearing but not her speech. As she reached the stages of running as a toddler we noticed that she was incredibly clumsy. She also had gross motor skill challenges of coordinating her body movements properly when playing sports and dancing. As she reached preschool age she was falling behind in fine motor skill developments such as cutting with scissors, drawing and coordinating fine skilled body movements. In November 2015 Alexis was given the diagnosis as Global Developmentally delayed due to these issues we had no answers as to why. Finally after 2.5 years of public and private speech thereapy with no progress Alexis was diagnosed with Childhood Apraxia of Speech (CAS) also known as Verbal Dyspraxia. Apraxia is a motor planning disorder of speech so basically her brain and mouth work just fine but the connection between the two when forming the simplest of speech patterns are lost to her. In some children this disorder can affect the motor planning of other parts of their bodies which is referred to as Dyspraxia. This is the case for Alexis. She is working through early intervention physiotherapy and occupational therapy to strengthen those motor planning patterns. Through personal research we found out about a type of speech therapy known as PROMPT therapy. This is a more physical approach where the Speech Therapist uses specific techniques to aide or "prompt" the mouth and its structures to articulate speech patterns. These therapists are specifically trained in this practice and not found within our health region. We were lucky enough to find one in Saskatchewan and started our therapy in December 2016. After 3 months of PROMPT therapy once a week Alexis has progressed from 4 intelligible words to over 25 with many new word approximations happening weekly. Alexis is a happy 5 year old girl who loves animals, swimming, playing dress up and dolls. She is very eager to learn because things are happening and she's finally being somewhat understood. She has been trapped in a body that doesn't allow her to communicate anything easily. Although we are happy to finally have a diagnosis, the prognosis is almost completely independent to the child and the correlation between effective speech therapy. Some children may never speak while others can go on to developing fairly normal speaking abilities. We are thrilled to have discovered our PROMPT therapist and hope that one day our daughter will speak fluently, continue to dance her heart out, play sports, write her stories clearly and we truly believe every child deserves a voice.
Dawson Richards - Minnedosa, MB
Dawson is a sweet, loving boy who enjoys music, swimming, and playing with his sister Georgia, mom and dad. Dawson will be turning 4 at the end of June. In early stages we noticed that Dawson was not developing at the same rate as other children his age.
We were referred by our pediatrician to The Child Development Clinic in Winnipeg. In February of 2015, at 19 months, he was diagnosed with Autism spectrum disorder.
Dawson now has a supportive team of therapists he works with frequently. His team consists of his Physiotherapist, Occupational therapist, Speech and Language Pathologist, and Child Development worker.
Unfortunately at this point Dawson does not have any speech. His struggle to
communicate his needs to us is one of our top priorities. Working alongside with our speech therapist we have tried sign language, which Dawson does not respond to, and are now implementing a Picture Communication System using pictures of familiar items to offer Dawson choices in his daily life. As he develops further we would like to look into private speech therapy and introducing music therapy in hopes to improve Dawson's communication skills.
Being on the Autism spectrum also brings along a lot of sensory issues for Dawson. He can become overwhelmed easily and is sensitive to light, loud noises, among many other things. Dawson really struggles with textures in his food, making his diet and nutrition a great concern. Coping tools for him in these situations are another top priority for our family. Dawson has some physical limitations including both fine and gross motor planning and we expect there to be more challenges in that regard in the future. Specialty items such as an adaptive bike, sensory swing and other sensory items could help Dawson cope in over stimulating environments he may encounter.
These will be especially helpful as he reaches school age.
Presently we do not know where Dawson lies on the Autism Spectrum. It is a very large spectrum and because of his age it is very difficult to determine what challenges Dawson may face in the future.
Ryder Fenty, Miniota MB
Ryder Fenty was born in Winnipeg, where he had gone for a fetal assessment. Doctor's found that Ryder's high blood pressure & low birth weight called for a ceasarian birth. As the umbilical cord was tied in 2 knots Ryder had to stay in NICU for 5 days & was fed by a feeding tube.
At 6 months Ryder's parents found he was not doing things a 6 month old should do & they took him to the Child Development Clinic in Winnipeg. A trip to the eye Doctor & Ryder came home with glasses. November 2013 Ryder's parents heard these words "your child has cerebral palsy". It was a devastating day but they remembered the words they had heard before, " you are only gifted with what you can handle". January 2014 Ryder had an MRI at Children's Hospital confirming the diagnosis of Microcephaly with Cerebral Palsy.
Ryder continues to see specialists for eye & development. 2 weeks before his 2nd birthday he started independently sitting up, pulling to stand & crawling. Yes, all at once, he is a "little fighter". Ryder loves to swim read books, pet the horses & sit in Grandma & Grandpa's hot tub. He continues to grow & change every day.
At the age of 3 Ryder still depends on Mom & Dad a lot more than some. Still not able to walk, he is the most positive little boy. The Family are planning to do some renovations to make it more accessible to Ryder as he now has a walker to help him get around. Ryder & family are attending the Cerebral Palsy Bike Challenge which will be held in Brandon soon.
Maci Kerr, Neepawa MB
Maci Kerr is 2.5 years old & lives with Spina Bifisa. We found out Maci had Spina Bifida before she was born.. She was born June 13, 2013 in Winnipeg at HSC. & was only 44 hours old when she had surgery on her back to correct her spinal cord. The surgery went well. She stayed in the NICU for 1.5 weeks, then graduated to the CK3 ward in the children's hospital. On July 2nd, 2013, Maci had a shunt put in, that surgery went well. On July 9th Maci came home. We had monthly visits, 3 month visits & now see the Dr.s in Winnipeg every 6 months. We are a low income family so things do get tough., especially going from Brandon,where we live & sometimes having to stay overnight.
Maci is a very determined little girl. She is unable to walk yet on her own. We are hoping one day she will, we just don't know yet. I want Maci to grow up knowing she can do whatever she wants to such as play sports, dance & swim.
Trisha Kerr, is Maci's Mom 26 years, originally from Neepawa. I am a full time support worker and I really enjoy my job. Tanner Kerr is Maci's Dad, 26 years old, originally from Hamiota, MB. Tanner is currently off work due to an accident He is eager to get back to work.
Jacob Kerr, Maci's little brother born Feb 18, 2015. He loves playing with his toys, eating, playing with his sister & bugging her.
Haylie Hopfner, Ste. Rose MB
Haylie was born in Winnipeg, 3 weeks premature due to her Mother's health Haylie weighed 4 lb 9 0z. She had a short stay in ICU, gaining weight & eating on her own. 6 days later she went home. We soon realized she was a lot weaker than most babies her age, We were told as she delivered early it would take a while to catch up. At one year they began to take us seriously, when she was unable to sit up unassisted, grab & play & had never made a sound. We were referred to a neurologist for an MRI. Her Mylan was abnormal & the search for a diagnosis began. After 6 years, over 5 MRI's, 2 muscle biopsies, a bucket of blood drawn & many tests everything came back negative. An EEG in Winnipeg found she has epilepsy & leg jerks quickly turned in to Grand Mal seizures which were happening often. Too much activity, flashing lights, extreme tiredness & fever seemed to cause the seizures, they are always Grand Mals & last 2 minutes.
As of today Haylie is a happy little girl & attends Grade 1, 3 1/2 days a week in Ste. Rose. She has a one on one at all times, & occupational therapist, a physio-therapist. She loves the outdoors & people. She crawls around, uses a walker at school & a specialized bike. She loves books & toy cars. Sister Ayva is very helpful to her. Still no diagnosis for Haylie. In Vancouver the test results ruled out Angelman's disease. An appt with Toronto Sick Kids is expected soon.
Update Xmas 2016: Haylie is in Grade 3, on an extra medication that is helping to control seizures, has had her tonsils out hoping to clear up some sinus problems, so far no change. No word from Toronto. They have started renovations for their bathroom, but have found no plans for a special needs bathroom, so are designing their own which will take a little longer. Haylie remains a happy little girl. Sister Ayva and friends help her out at school.
Bailey Phillips, Roseland MB
Bailey's story written by her Mother 2015:
Bailey Phillips is an 18 month old little girl who was born with congenital cytomegalovirus (CMV) . She has already had to have blood transfusions, 3 bone marrow biopsies & spends hours driving to & from the hospital both in Brandon & Winnipeg. Bailey lives in Roseland, Mb with her Mom & Dad Kristen, & Garrett Phillips, & spends hours playing with her big sister Leah. She has glasses & hearing aids as a result of the virus. Bailey still remains a bit of a medical mystery & we are constantly investigating into her situation with specialists all over North America.
March 2nd 2017 : Bailey is still having to have blood related transfusion every weeks. Bailey in the hospital having her 235th, bottom picture.
Her parents & her many Doctor's are still trying to find out why Bailey's blood is the way it is. they have had blood samples sent to large centers in Canada & the USA with still no answers. They have tried many different medications & nothing seems to work. Bailey remains an amazing happy little girl who is not afraid to do or try anything. She loves swimming, playing outdoors, riding in the tractor with her Dad & playing with Leah & new new sister Jordan. She also loves special dressup, family dinners like on Valentines Day!
Kynley Kristinnson, Virden MB
Kynley's Mother Jody Writes in 2013: Kynley Kristinnson, was born to Blair Kristinnson & Jody Schweitzer of Virden, MB, on August 23rd, 2013, weighing 5Lbs 14 oz at 36 weeks. She was prenatally diagnosed with a heart defect but until she was born they did not know the complexity of it, Kynley was born in Brandon, but was soon airlifted to Winnipeg NICU. Here she was diagnosed witha hypoplastic left heart as well as an AV canal defest. At the start, Kynley managed quite well on her own, was discharged home briefly, until she started having difficulty breathing, which led her back to Winnipeg, shortly after she was airlifted to the Stollery Children's Hospital in Edmonton, AB. Kynley spent time in the NICU there until the cardiologists/surgeons figured out what would give her the best long term prognosis. This plan consisted of a minimum 3 stages of surgery, with a goal to reroute her anatomy so that only the right side of her heart would be circulating blood throughout her body. Kynley had her 1st open heart srgery at 1 month old with minimal complications. Home for Thanksgiving 2013, she continued to grow and thrive. Kynley was scheduled for a routine catherizatiion early in the new year, during which they picked up some more comlications, leading to her 2nd open heart surgery Jan 9, 2014, Since then there have been many complications which led to 2 more additional heart catherizations, insertion of 2 stents, 3 more open chest procedutes, 2 cardiac arrests, & 100 hours spent on ECMO (heart lung bypass machine). On Feb 14 she was discharged from the Pediatric Cardiac Intensive Care Unit at the Stollery hospital, & on Feb 17th we flew back to Winnipeg & spent aweek there for appts with cardiology. Kynley has a paralyzed left vocal chord leading to her being tube fed, as well as a paralyzed left diaphragm, As of this time she still needs at least 1 more open heart surgery to complete her new circulation however there have been complications with her lungs as well as the function of her heart. This has left future course of action uncertain until we can see how her lungs & heart perform as she grows. March 3, 2017 Kynley has had more complications , time in hosptial with lung infection and another heart operation. She seems to be doing quite well now. She was the most beautiful flower girl for her Mom and Dad's wedding September 3, 2016. Plans for the wedding had been put hold on, when they found out how sick their little girl would be at birth. It was a beautiful wedding. Kynley had a ball, dancing & playing with her cousins & friends.
Garrett Hess, Ochre River MB
Garrett Hess was 6 years old in 2014. He attends kindergartern in Ochre River & goes to daycare. He lives with his parents Steven & Liza & sister Maya. Garrett was diagnosed with Crebral Palsy at 18 months & developed a seizure disorder at age 4. This has left him with poor muscle tone & a delay in speech. He learned sign language at 2 years. At 4 1/2 he started speaking verbally but sill severly delayed. His mobility is also affected, he has walkers, special shoes & a wheel chair & stroller for longer walks. Garrett takes medication for seizures, some of which last 11 to 13 minutes. He is very determined to do what all children do & manages as much as he can on his own. His parents have had many emergency trips & lots of appointments in Winnipeg. Now, that he is getting older his parents realize the many renovations they need to make that it would be better to build a new house that will suit Garrett's needs. Also, getting him in & out of a van is difficult so some thought will have to go into that. Garrett also sees an ophthalmologist as he requires glasses.
Update Christmas 2016: In September Garrett had a Dr's appointment where he had an EEG to see if his brain had changed at all as they have not had a seizure in almost 3 years, they were able to start weaning him off the medication & by December he was off of the drug. Garrett is part of the Swim Ability Manitoba, Dauphin chapter & has conquered all fear of the water loveing every minute of it. Garrett started Grade 3 this year & even with a change from his long time one-on-one he has progressed by leaps & bounds. Liza saya "It seemed when they began lowering the dose of medication it was like a curtain had been lifted".
Garrett was asked to do a photo shoot for the Rehabilitation Center in Winnipeg, for newsletters, brochures, newsletters & maybe we would even see that million dollar smile on a billboard.
Garrett enjoyed time in the pool last summer & visits to his Uncle's cabin. They spent a few nights in Winnipeg & made a visit to Tinkertown, so the whole family enjoyed the rides.
His sister Maya is 5 & she always looks out for Garrett & is mature beyond her years. They really enjoy being together.
Aleda Mitchell, Brandon MB
In 2013 Aleda Mitchell was 6 1/2 years old, in Grade 1 & living in Brandon with Parents Brett & Tracy & brothers twin Kobi & older brother Seth. She loves to sing & dance. At age 15 months she had a seizure disorder as a result of a stroke. Seizures were prolonged & hard to control & sometimes meant being hospitalized. Seizures would tire Aleda & leave her having difficulty walking & talking but in a few days would be back to herself. In November of 2012 she had one of her hour long seizures, was admitted to Brandon RHA & then air lifted to Winnipeg remaining there till January 2013. After 5 days she woke up with severe brain damage, not allowing her to do anything on her own. She was tube fed & needed constant care. Doctors suspected Alpers Disease a Mitochrondial Disorder which is degenerative & a terminal genetic disease. Parents realized in order to bring her home they would have to do many renovations on their house.
2014: Aleda is doing well. she is off her feeding tube & can now walk on her knees and pulls herself up on objects to a standing position. She holds on all by hrself and is slowly getting a feeling of going on her own. She is more interactive & aware with her family. She is an amazing little girl & has a lot of fight & personality & her parents say they have learned so much from her & she continues to teach them daily. They thank all who have supported & helped their family.
Mackenize & Skylar Wozney, Minnedosa MB
Mackenize & Skylar reside in Minnedosa with their parents Adam & Teresa. Mackenzie is 8, in Grade 2 in Tanners Crossing school. Sklar is 6 & is in Kindergarten & attends daycare.
Mackenzie so far is an "undiagnosed case", which means she has underwent numerous metabolic & genetic testing, her DNA has been all over North America but they have never been able to put a name on her condition. She has physical & mental delays & Epilepsy (Lennox-Gastaut Sundrome) for which she takes a concoction of medications. In the past year her saizures have spiraled out of control & is slated for susrgery to have a Vagus Nerve stimulator implanted to try & regulate the seizures & reduce the medication that is stopping her from participating in her daily activiites. Mackenzie remains friendly & says "Hi" to everyone.
Skylar & a stroke in utero which affected the left side of her body & caused some learnig delays. She wears braces on her left leg & left hand to help. She is also affected by epilepsy. She has been to Vancouver for brain surgery, (hemispherectomy) She was able to be weaned off some medications that were sedating her & she now enjoys more everyday life activities. She has come a long way since surgery but will continue growing & improving. So far she manages to wrap everyone around her little finger with those big brown eyes & mischevious little grin. She loves to tease & laughs a lot with friends & family.
Even though both girls have enured a lot in their lives, they are very happy & love to go quadding & swimming. They continue to travel to Winnipeg, Minneapolis & Vancouver for appointments & checkups.
The parents would like to thank all of the people who have made a difference in the girls lives by supporting them always. 2017 - Mackenzie & Skylar continue to keep their parents busy, making sure they make their appointments & get to school etc. They have recently moved into the country & ride the school bus to school & they can enjoy the wide open spaces for quadding etc. when their parents can find the time. If you happen to see Skylar be sure & say Hee! Haw! , as she is a Hee Haw girl.
Bryce Christopherson, Neepawa MB
Bryce's parents Dexter write of their travels through Manitoba and Sakatchewan to various doctors to help Bryce. Unfortunately resources are limited, as are the professional's knowledge on autism. We would like to take Bryce to the Mayo Clinic in Rochester, NY, where he would see expert physicians & therapists in the field of autism. This would give our family, Bryce's teachers & care providers a larger understanding of Bryce, proper medication & new techniques to aide in his development.
Bryce enjoys school but because of his sensory processing issues that he & many children with autism deal with he sometimes finds all of the activity difficult to process. Bryce enjoys being outside & swinging. He finds it very relaxing & a break from all the noise etc. As he grows older & bigger in size safety becomes a concern on a regular swing set. We would like to purchase a saucer swing that would enable Bryce to do his favorite activity safely.
Bryce's developmental delay presents challenges for him to ride a store bought bike. We would like to purchase a developmental youth trike free wheeler. They are quite expensive.
Bryce lives in Neepawa with his parents Dexter & Danielle Christopherson. As you can see when we went to visit Bryce & his parents, they had already purchased a bike and Bryce absolutely loved it so the family commented they were getting lots of walking done.
March 2017 Bryce's Grandmother says Bryce is doing very well, he is speaking clearly, not long sentences but he can make himself understood. His parents are working on finding out about his diet, should he be eating gluten free, things like that, as a result of this his mother is involving him in the cooking. She is also teaching him to do laundry as nothing upsets Bryce like a spot on his shirt as he is a very clean and tidy young man. Bryce is in highschool now & has an excellent teacher aide & his Grandmother says she has seen a difference. He makes perfect letters & loves school. Bryce's parents continue to see different Doctor's & are always looking for more ways to help Bryce manage his autism.
Griffin Bugg, Minnedosa MB
2012: Griffin's Mom writes: Griffin is a happy 4 yr old boy, born April 15th 2008, who lives with his big brother Devin, 6 & his cat Skittles. His parents are Michael & Sondra Bugg, they live in Minneodsa. Griffin goes to Nursery School part time, enjoying school & his friends, He loves the water & is fascinated by penguins & loves Baby Einstein videos. At 4 months he began having very mild spasms & at 6 months they recognized them as seizures. He had an MRI & the test resulted in Lissencephayl. In 2010 they discovered he had isolated Lissencephaly, the 17th chromosome was altered. This is a malformation that happens at the sperm &egg level, nothing that can be treated.
For Griffin, this meant that his brain does not have all the folds & grooves & is smooth. This causes developmental delay, low tone &nd seizures, unability to walk & talk, with a low life expectancy.
We are fortunate that Griffin is still happy & progressing well. He conquered sitting up in Feb 2011. He uses a walker to get around the house. In 2011 his seizures returned and he was given medication for that. It was looked into getting a service dog which has been trained to detect & alert seizures & would be a companion for Griffin.
The Buggs appreciate the support given them by their friends, the community & the Little Valley Jamboree.
2017 : With the money raised by the Jamboree the Buggs built a deck on their house & gave Griffin a safe place to play, get around & his walker & have a swing. They also were able to install a swimming pool & in 2015 the Jamboree helped them out with the installation of a heat pump for the pool for Griffin. During the summer he has his phsyotherapy treatments there. A service dog came to Griffin for awhile but it tended not to work out for the family.
Griffin had periods of days with many, many seizures & spent time in hospital for pneumonia but he never stopped fighting & came through it all. He seems to be doing fairly well at this time. Griffin has grown so much his mother found it hard to get Griffin in & out of a vehicle. Funds were raised by family & friends. The Presidents Choice Children's Charity presented Sondra & Mike with a large donation to help them obtain a larger van which was equipped with special equipment to get Griffin in & out of the van. This has made life easier for going to Doctor's appointments etc.
Adam Wiebe, Brandon, MB
Adam is 7 years old , Grade 2 & lives in Brandon with his Parents & his dog, Ubu . Adam is a very active person, has his yellow belt in Isshinryu Karate, plays soccer, swims & is learning basketball. He is a super social person who enjoys friends, talking to the neighbors & always has a story to share.. We first suspected something was wrong with Adam at about 6 months old. He was always spitting up & breathed like Darth Vader. We saw the Doctor often because his chest was constantly congested. Otherwise he was a healthy happy baby, At 1 year old he was tested for allergies, negative. Adam was losing weight , hospitalized for pneumonia, new X-rays & a test came back with Cystic Fibrosis. He was sent to Winnipeg for a month while the Pediatric Team.. The next few weeks were a steep learning curve for the family. They learned that C..F. is a hereditary condition that affects the lungs & digestive systems of those who have it. The result is difficulty digesting food & breathing. The best thing to happen to Adam was a diagnosis & they could go from there.
Adam's daily regimen includes a puffer which opens up his airways, taking an inhaled medication to thin the mucus in the lungs & having chest pummeling to help loosen the mucus in his lungs so he can cough it up. These steps alone take up to an hour a day, twice a day if he has a cold. He takes between 20-30 pills a day at meal time, to help him digest the fats & nutrients in his food so he can stay healthy and active.
Adam has learned how to manage some of his medial regime himself & has learned to recognize signs that indicate change in medication or therapy is required .He is also taking control of the 4 times a year visits to doctors who monitor him. As he gets older we hope to purchase a percussion vest for him, that will allow him to carry on with his day while he takes his life saving therapy.
The family is grateful to the community of people who care about Adam, The School staff, the YMCA, summer camps which help him with his medications. He has a physio therapist, occupational therapist for his fine motor skills. He has had great support from Cystic Fibrosis Canada & the Brandon Kinsmen and Kinette Clubs. Adam has participated in the annual parade a fundraiser event in Brandon for Cystic Fibrosis.
2017: Adam's family purchased a percussion vest for Adam, which changed his life considerably. It is used night and morning & he is able to keep up with homework while wearing it. It's given him even more independence. He continues to pursue his Martial Arts, school sports, running & swimming. He is at the top of his class academically. He looks after his own medical needs, which impresses his medical team.His lung functioning is near normal, because he is such a determined young man, a very likeable friendly young man.
Porter Dunn, Brandon MB
Porter's story - 2011 : I am 7 years old & live in Brandon with my 2 youger brothers; Blake & Lawson, my mom & dad Cindy & Bruce Dunn & my best friend my dog Hudson. I am in Grade 2 at Earl Offord School which I love. At 2 months old I started swimming lessons at the YMCA. I enjoy Karate (since I was 1 yr) & just earned my black stripe belt. This year my brothers & I joined hockey in Alexander which was really fun. On June 2, 2010 I was diagnosed with Juvenile Diabetes. I was in hospital a few days & in Winnipeg so my parents could learn about my disease & how to take care of me. I didn't feel good, only weighing 39 lb., but after insulin injections everyday I have gained 15 lb..
Juvenile Diabetes is an autoimmune disease which affects the insulin producing cells in the pancreas. Without insulin, my body cannot absorb sugar from my blood to my cells in order to produce energy, essentially starving my body. Without insulin the sugar stays in the blood making the blood thicker like syrup. this high blood sugar results in lack of concentration, moodiness, fatigue & increases my risk of diabetic complications like going blind, heart disease & leg/foot amputation due to infection. Since my body doesn't make insulin any more I have to take it by injection. Each day I get 4-5 needles of insulin. I have to poke my finger to test my blood 4-6 times each day. I always asked my mom if I had to have a needle the next day & she said YES. I have gotten used to the routine & understand that I will need insulin for the rest of my life. The needles don' hurt that much, but I don't like them.
I have to eat at the same times each day & mom & dad have to count the carbohydrates in everything I eat. I have to have the right amount of food & exercise to keep my blood sugar in a normal range. Too much of either I get dizzy & achy muscles. I have to let my parents know right away or I will go unconscious. I am excited & scared about an insulin pump. It means I will get 3 needles a week instead of 30+, my insulin will automatically run through the pump(almost like an IV line). I look forward to being able to eat whenever I want instead at set times. I am excited to sleep-in in the morning & I can't wait to go for a sleepover at a friend's house!
2017 : Porter's family purchased an insulin pump for Porter and they say it literally changed their lives. Porter learned how to do regulate his insulin
and take care of his pump, and it has allowed him independcence, the ability to play football and hockey still & do anything. Porter's mother writes;
Porter will attend diabetes camp again. It is a 1 week sleepover at Camp Douglas north of Winnipeg where some 100 Type 1 diabetic children get
together for a week of camping activities while under the supervision of a medical team. Camp has been a great place for Porter to meet friends & see
that he is not alone in the fight! She writes how this pump has changed their lives in a good way & to say Thank you once again.
Arwen Chapman, Neepawa MB
Arwen's story: Arwen, a 7 year old girl living in Neepawa with brother Graeme & parents Blair and Kim. She attends HMK in the 2nd year of kindergarten. Arwen loves to swing on her back yard swing set, is always keen to go for a drive, enjoys swimming, & will sit & look at family photo books for hours. If you don't see Arwen coming(perhaps on her tricycle in the school halls), you will definitely hear her. Her hoots & laughter--along with a few earsplitting screams -- are unmistakable.
When Arwen was 1 year old & missing her milestones, a pediatrician told them she had low muscle tone but nothing too worry about.
As the delayed development became more pronounced they went to specialists (genetics, neurology) in Winnipeg. First Doctor suggested Downs Syndrome. After genetic testing it was discovered that Arwen had a chromosome disorder called a translocation. a piece of her 3rd chromosome had migrated to her X chromosome. Many of these translocations are completely harmless but Arwens was not.
Arwen loves people, is incredibly social & almost always in a good mood.She does require full-time supervision. She has very linmited self-help skills, eaitng, dressing, bathroom. Safety is always a concern. She does use some signs & a few sounds to communicate. She works with a picture communication system to help make her desire known. Her low muscle tone makes her a bit of a "crasher and banger" she knows what a soft touch is but doesn't always use it.
Arwen has recieved help from Children's Special Services & had regular visits from physical, occupational & speech therapists. This work continues at school with teachers, educational assistants, resource teachers. administratioors & specialists. We have been very fortunate to have such a wide community of caring people to help with Arwen's care & development.
Sometime after the Jamboree the Chapman family were able to go on a holiday together as a family, for the first time since Arwen was born. The Jamboree donation was used to purchase a sturdy three wheeled bicycle that helped get around to see everything at Disneyland. They also purchased a trampoline. Arwen does not need any medical treatment at this time but will require lifelong supervision & care & the Jamboree has made a large contribution towards that! Thank you Little Valley Jamobree for your help & support.
Phoenix Gayle Lavallee, Brandon MB
Hello, my name is Phoenix Gayle Lavallee. I am 8 years old. I was born in Brandon, MB on April 14th, 2002. I am originally from Keeseekoowenin First Nations Band, but I have been living in Brandon for most of my life. I am a big sister of Tallyah, Fayth and Brooke. My Mom's name is Robyn and my step father is Kevin. I also have a puppy named Jingles. I really enjoy dancing, singing and being a big sister. I also like watching movies and swimming.
On Christmas Day 2007, my dad (Melvin) and I were in a car accident . My daddy went to heaven that day and I was in critical condition with life threathening injuries to ny head and my stomach. I was on life support and in a coma for 2 months. I had 3 brain surgeries and 2 abdomininal surgeries. The Doctors told mommy that I might not make it because my injuries were'nt getting better. After 2 months in a coma I began to show signs of recovery and to my doctor's amazement I survived, the Doctor's say I am a miracle child. This is where my journey began. I spent 5 months in the Winnipeg hospital, I couldn't walk, talk or eat but eventually I was welll enough to come home .After I returned home I began intensive physical therapy and with the help of my therapist Wendy I learned to walk again. I have hemi paralysis in the left side of my body and a lot of nerurological damage which makes it very difficult for me to learn. I am in a lot of specialized programs at school and do a lot tests. I have recently begun to have seizures, about 8 a day, but the Doctors are trying to find the right medication to control my seizures. I have a lot of medical conditions and require a lot of medical care by Doctors and Therapists. Having mommy by my side makes me happy. I beat the odds. I am making progress and from here my healing journey continues.
Thank-you evereyone for your support, looking forward to meeting you at the Little Valley Jamboree.
Love Phoenix Lavallee.
2017: Phoenix graduated from Grade 8 to Grade 9 last year. She is doing well at school. She continues with the physio and helping her to get her strength back and stay healthy. One of these Jamboree's she will come with her grandparents as they have never missed.
Cody Payette, Neepawa MB
Hi My name is Cody Payette. I am 10 years old. I was born in Winnipeg, MB February 6, 1999. I live in Neepawa, Manitoba.
My Mom is Melissa & my 2 year old brother is Blake. When I was about 18 months old my Mom noticed that something wasn't right. Because I wasn't sitting up on my own, & not advancing as the other kids my age were..
That is when our journey started with all the Doctors. I saw numerous specialists & had numerous tests done. It took a very long time to be diagnosed. Finally in 2003 I was diagnosed with severe acute cerebral palsy.
I have a wheel chair & can walk a little with the help of a walker. I do not talk, but can make a lot of noise if I want to Ha ha
I had my first surgery in February of 2004. I had heel cord lengthening to both my legs. Then in 2008, my left leg was turning in again, another surgery, heel cord & hamstring lengthening, so far so good. I still cannot walk on my own but my Mom & my therapists & my wonderful teachers are doing the best they then can to help.
I would really like to be able to communicate with everyone, as it can be really hard for me to express myself sometimes.
I love listening to music, & playing with any toy that makes noise or llights up. I love watching parades & fireworks. they make me laugh. I also like bowling, Mom & I stand up & she throws the ball. We have lots of fun.
Cody is doing very well now, has had more surgeries. He recently was given some help from the President Choice Children's Charity as well as donations from other sources & they now have a safe van to travel in, this making Doctor's appointment & traveling around so much easier.
Cody & his Mom & friends also participate in the Cerbral Palsy Bike Race held every February in Brandon. All monies raised stays in Westman.
Cody turned 18 on February 6 & his Mom, Grandmother & a bunch of friends took him to supper at the Carberry Casino & let him play some machines & he actually won some money, cashing it in himself (with Mom's help). The Casino were very accomodating & Cody had a wonderful time, he will not forget.
Keith was born in 1999. When he was between two & threee he was diagnosed wth ASD. On his 4th Birthday we learned about the
St. Amant Pre-School ABA Program. After a short waiting period we were accepted into the program. By age 5 we had a full-time tutor working with him at home.
The Pre-School ABA Program consists of a Clinical Consultant, a Senior Tutor and Tutor. The Clinical Consultant provides programs that target all areas (curriculum, behavior, social, etc ) The Senior tutor supports te tutor, assists with new programs & gathers & enters data. The Tutor carries out the programs on a daily basis with the child & records all the data.
We participated in the ABA proigram for the maximum 3 years with great success. In September of 2007 we entered into the School Age INterim ABA program. The School age Programs provide support to the school system in the clasroom. It also provides tutoring in the home on weekends & holidays.
In June 2008 the Provincial Government capped the Interim School Age at three years. When this program ends Keith's tutoring time will end. The Money raised by the Jamobree will be used for tutoring time especially during the summer. The more tutoring time Keith has during the summer months promotes success for Keith in the school year.
Keith enjoys school very much. He is currently in Grade one & his favorite subjects are math, language arts, especially reading. Without Keith's tutor who went into the school system with him & the support from the St. Amant program he would never have had this much success in the school system.
2017: I was speaking to friend Henry in Mc Creary that knows Keith vary well, in fact it was his wife who was Keith's tutor. He says Keith is doing very well, speaking some where he never spoke before. He also had a good memory as Henry quizes him lots on just ordinary day to day things. He also enjoys helping Henry at the McCreary recycling. Henry's wife says she is thinking of retiring so hopefully his parents can find someone to tutor him so he can continue to grow and learn.
Sara Salmon, Neepawa MB
Sara is 7 years old, lives just outside Neepawa with her parents, Gary & Susan, twin sisters Samantha & Emma & brother Wyatt. She attends kindergarten in Neepawa & has a one-on-one Educational Assistant. Sara loves music, dancing, painting, puzzles & computers. Sara was diagnosed with Dravet's Syndrome also know as Severe Myocolinic Epilepsy of Infancy at 3 years. 3 years of uncertainty, testing, & experimenting to reach this diagnosis. It is a rare seizure disorder with only about 500 known cases.
She was born a healthy, perfectly normal baby. About 51/2 months, on a very hot July day, she had her first seizure lasting 15 minutes. She was rushed to Winnipeg. Lots of tests, spinal taps, CT scans. Everything normal, she went home. A month later a second seizure, 20 minutes. Back to Winnipeg for more testing.This continued for 4-6 weeks. To date, she has had 50 febrile status epilepticus, (temperature induced long lasting seizures). There were many more trips to Wpg. Sara was put in intensicve care twice and once with a respirator. She has also had 150 episodes of short 15 minute seizures. Sara's seizures can be on the right or the left side of her body & most are triggered by a raise in body temperature, a too warm bath or hot sun. She misses out on lots of summer activites. Her temperature is constantly checked with an ear thermometer, she has recurring sinusitis & ear infections & has had t-tubes put in her ears.
Sara has gone through various blood tests, spinal taps, chest x-rays, CT scans, EEG's, MRI's & muscle, skin & nerve biopsies requiring surgeries. She has been under the care of many medical specialists including her pediatric neurologists, geneticist, allergist, audiologist, ear, nose and throat specialties. Everyone worked together to find a cause for her seizures to lead to a diagnosis. We were referred to a pediatric neurologist in Halifax & he eventually diagnosed Sara when she was 3 with Dravet's Syndrome. She was placed on 3 drugs, one very expensive one had to to come from Europe through Childrens Hospital. We learned to balance everything and Sara began to have fewer seizures. Also Sara develpoed normally until 18 months when her speech & language stagnated. Her speech is very hard to understand, but we believe she understands more than we think. She requires updated equipment & technology for communication & as her fine & large motor skills are affected, her walking & running is shaky. She requires a special bicycle/tricycle that will allow her to ride with her family. Sara has also been diagnosed with symptoms of Autism Spectrum Disorder. There is a Genetic blood test in the US that would confirm Dravet's but the Prov. of MB will not pay for it. As we would really like to have this done, we planned to use some Jamboree funds but the Prov. decided to pay for it. It confirmed without a doubt Dravet's Syndrome. It also confirmed that our other children did not carry the gene. We bought a laptop for Sara from the Jamboree for use at home & at school. A special bike was to be purchased but the Prov. came through again. Then the special medicine from Europe went from $125 to $500 a bottle so the Jamboree helped to soften the blow there. We are very thankful for all the support people have given to Sara & our Family.March 2017: Sara's Mother tells me Sara is doing well. She still has a few seizures, a few more maybe because of puberty, but the rescue meds they have are able to stop them. She is in the Life Skills class at WMCI in Grade 9. She enjoys playing the drum in band & loves gym class. Throwing balls is her favorite. She loves swimming & skating with the family & loves to sing & dance at home. Sara is a very happy girl.
Sara Beth McKean
On June 2, 2008 Sara Beth writes with her Dad Rod's help: I was born on October 11, 2006 at the Women's Hospital at the Health Science Center, Winnipeg. I live in Brandon with my parents Rod & Beth Anne & my 2 brothers Cody & Dylan. I had to stay in Winnipeg for my first month after birth. I was diagnosed with Rubenstein Tabi Syndrome. In my first month I have undergone numerous amounts of tests & seen a wide variety of specialists. My condition has caused some health problems. When I was 4 months old I underwent surgery to have a g-tube installed into my belly so I could eat. Before that my mom & dad used to make me swallow a tube that went down into my stomach. I could not drink from a bottle because I was not strong enough to swallow the milk. I would apsirate. I have had pneumonia twice from refusing my milk & having it go into my lungs. Even though my parents fed me through the g-tube. I still had problems with reflux, & when I would start to play or choke on my own saliva.
When I did this my parents would have to re-feed me to keep me from being dehydrated. This continued from 4 months until I was 15 months old, when I had to undergo surgery once again. This surgery helped & has stopped me from being able to throw up. Only now maybe mom & dad can put some weight on me. I now weigh 18 lbs. I have constant trips to the Children's Hospital where I see the specialists that take good care of me & check on my progress. My immune system is not great and there may be problems in the future that I am not certain about. My parents contact other parents from Rubenstein web site to talk about what I may have to go through in the future. I am now 16 months old.I like to be cuddled by my family & friends. I don't like to crawl but do like to sit & play & especially with my stainless bowl. When I am feeling good I like to smile & sometimes give a little giggle. My parents are proud of me. & no matter what my future holds they are always there. When you see me I will smile, & if I do not smile, I will stare at the beautiful people that have helped me.
Sara Beth continues to improve, she is off her feeding tube, she can walk, run & play. She spends a lot of time with her grand parents in Dauphin & they have had lots of time tp spend with her. She is doing well at school & loves spending time with family & friends. She has come a long, long way & is an amazing little girl.