Kaleb is a 10 year old boy, who was diagnosed with toxic epidermal necrolysis (TENS), a life threatening skin disorder that causes severe painful skin rash that blisters and peels.
Kaleb's body was 90% affected and we spent 73 days in Hospital. First 5 days we spent on the CH ward before being moved to the Pediatric Intensive Care Unit where he spent 12 days and underwent multiple procedures until he was finally stable enough to move to the CK unit, where we spent our last 29 days in Winnipeg Health Science Centre having Dressing changes and Amniotic Membranes Sewn into his eyes.
Kaleb spent 3 ½ weeks in Brandon on the Pediatric ward healing before being released home. Since being released Kaleb has undergone a few eye surgeries to scrape the scar tissue out of his eyes. Last June we went to Sick Kids in Toronto to undergo Eye surgery to have Mucous membranes grafted from his mouth into his eyelids. He has a wonderful team of doctors in Winnipeg that we see regularly.
We do hope that one day he can have a pair of custom made contacts for his eyes. Kaleb deals with dry eyes and inflammation in his eyes daily. And although we don't know what caused Kalebs first outbreak, he continues to live life as a kid and fights off the pain. He loves to show cattle, be on the farm, and play hockey.
Kaleb lives with his Mom and dad Leah & Kyle as well as his younger sister Lakelyn. He's always willing to tell anyone about his disease and how anyone could be affected. And never lets anything get him down.
Roran was born August of 2015. He is our second born son, and came into this world a bright-blue eyed, roly-poly little thing. In the first year of Roran’s life, we started to notice that he was hitting milestones late. Rolling from back to front and front to back took longer than is typical. He didn’t seem to want to crawl. We didn’t worry much that first year. Babies all develop at their own rates, everyone said. He’ll get there soon, we told ourselves. But he continued to stay behind. Around a year and a half old, through the advice of an Early Childhood Educator acquaintance, we sought a developmental evaluation. January of 2017, we were slightly surprised to receive Roran’s diagnosis of autism.
Autism is a unique thing. There is a saying in the world of autism, “If you know one person with autism, you know one person with autism.” The meaning is this: there are different levels of severity on the autism spectrum. Many people with autism can advocate for themselves, live an independent life, and in many ways, live what one might consider an outwardly typical life. On the other end of the spectrum, you will find individuals who more closely resemble our son; Non-verbal, eloping, intense sensory needs, highly selective food preferences, the list could go on. For these difficult to overcome behaviours, Roran receives Occupational Therapy, Physical Therapy, and is enrolled in the RELATE program. This a unique, RDI therapy based program, where parents are educated in childhood development, and the focus is building a foundation of trust, and reinforcing the parent-child relationships in our home. We are currently waiting to learn of his eligibility for a communications device.
Although Roran doesn’t communicate verbally, he certainly communicates. Occasionally we get small glimpses into his incredible mind through what he is able to convey. His resilience in his pursuit of connection with others is somewhat a rare find in severe autism. People often remark that his eye contact is a pleasant surprise, and more than once we have said and heard “I wish I loved anything as much as Roran loves ________”. His unbridled enthusiasm for the things he enjoys is a source of joy to anyone fortunate enough to witness it. Some of his favourite things include swimming, trampolines, Pixar movies, nearly any dessert, and nearly any form of carbohydrate, especially potatoes.
As Roran matures and develops, his cognitive abilities and skills also develop. We continue to teach him whatever we are able, with the assistance of his therapists. It is a difficult to explain experience, as Roran’s cognitive development is not linear as you would find in a neurotypical child. His milestones and achievements do not follow the largely established timeline of typical childhood growth. Despite this, one can be certain that Roran will keep you on your toes! He is quick and he is clever. He has a distinct knack for finding things he ought not, or that most wouldn’t. He frequently has his friends and family shaking their heads in wonder and possibly frustration at his unusual accomplishments.
Roran is fortunate to have 4 siblings- an older brother, Garrus (9), and younger siblings Naomi(6), Beren(4)and Androl(1). It makes us very proud as parents as we often overhear Garrus and Naomi introducing themselves and their brother to others. They instinctively explain Roran’s differences to others in the same breath that they share their own names. We all love him so much and are so grateful to Little Valley Jamboree for walking with our family through this part of our autism journey.
Jaxson Bruce Amiotte-Boles
Jaxson Bruce Amiotte- Boles, my miracle baby, what can I tell you.
Jaxson was born prematurely at 28 weeks on July 25, 2018 at 1 pound and 10 ounces in Winnipeg, Manitoba. A few months after Jaxson was born he was diagnosed with hydrocephalus, which is a neurological disorder of fluid buildup in the ventricles of the brain. At the same
time, Jaxson had multiple surgeries, an Endoscopic Third Ventriculostomy to a external ventricle drain, and then to something more permanent, a VP shunt, a thin tubing implanted in the brain runs
under the skin to his abdominal to let that fluid drain.
Later around two years of age, he was diagnosed with epilepsy and cerebral palsy, affecting his movement and muscle tone. Other than all that Jaxson is a happy little boy, loves to show off as much as possible, of course, play shy at first but later blows kisses and loves to share smiles and laughter.
We visit Winnipeg monthly as Jaxson has many doctors at the SCCY centre and Children’s Hospital. At home we have equipment to help Jaxson sit upright and the standing frame to work with his standing posture.
As a single mother times do you get emotional and difficult, but I am truly thankful for the family, friends, and supports we do have in place, Jordan’s Principal is a huge support to Jaxson, such as Jaxson great grandfather Len, Shaylynn and her two daughters, Jaxson Grandparents, Jan and Ryan.
This year Jaxson will attend kindergarten
at Erickson elementary school, which is exciting to start a new journey and meet new friends in the upcoming school year.
Some of the money that will be fundraised will go to school things such as clothes, equipment for the school, school supplies, some toys that best fit Jaxson that may help him learn to build, reaction timing, and words, travel expenses for appointments, a stroller that best fits
him, and a toddler bed an indoor wheelchair for the school and another
else needs for the school year.
From Jaxson Mother, Autumn Boles