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