Our Families Story…from Tiffany Houle
8 and 1/2yrs ago my youngest child, Leonie was 5 days old and had to be med-evac’d down to BCCH. She was having seizures. My daughter and I lived for over a month in the hospital, while my husband and oldest daughter Elise tried to continue making ends meet and keeping life stable in the north. Back down at BCCH Leonie underwent almost every test imaginable before they sent us home still without a prognosis or any promises for her future. Thanks to Dr. Moisey we found the right medicine to stop the seizures and thanks to the BVCDC we found hope and weekly reasons to celebrate even the smallest milestones! The OTs and PTs were like Olympic Coaches teaching us as parents the new pace of our lives. Developmental milestones that would pass most parents at the blink of an eye were an elongated series of tiny steps forward (think in years compared to months or weeks) and the BVCDC staff were never stuck for ideas on how we could reach the next goal. Thanks to the BVCDC my family and I are masters in the art of hope and potential. Our daughter, who was three before she could walk was able to stand up and turn on skis this season. Our little angel who had no words till the age of 4 is now singing around the campfire and is even starting to learn to read!
Her neurologist at BC Children’s Hospital has since assessed her as having a complex developmental behavior condition which includes seizures and severe global developmental delay. She is one of a very small group of children in BC that the medical community has been unable to diagnose with a specific condition or syndrome although her low verbal skills, sleep disorders, and movement and balance disorders have been compared to Angelman Syndrome by the Medical Genetics department of BC Children’s Hospital and many of her sensory and regulation issues can be compared to children with Autism. The fact that she has no formal label or diagnosis limits us from accessing most government funding as she does not fit into any designated category.
We as a family have been very fortunate to have the help of the Bulkley Valley Child Development Centre’s Early Intervention Program. The positive impact the BVCDC has had on us continues to affect us as they were the ones to introduce us to the North West Supported Child Development Program which offers family centred support in daycare and preschool settings and the At Home Program which offers help with school age assistance with OTs, PTs, and Speech Paths, financial aid for her medicine, and awesome bonuses such as respite and free provincial campground camping. Without the BVCDC we would be disconnected from all these possibilities and our family would not be thriving as it is today.
I owe the BVCDC and have begun payback by joining the BVCDC board of directors for the past 2 years. To know them is to see inspiration in action.