WELLINGTON – It’s not easy to ask for help. Krista Collicutt knows that first hand.
“Just after Kiptyn was born, we knew he wouldn’t be able to talk or walk or hold his head up,” said the 30-year-old mother from Wellington.
“Right before I gave birth I felt these little vibrations in my belly, coming from where he was. Knowing what we know now, I’m pretty sure it was a seizure.”
Kiptyn was born via C-section. Collicutt was told she’d be able to see him about an hour after she entered recovery. Then one hour turned to two, then three, and finally doctors told her Kiptyn needed to be taken to the IWK, where he remained for 24 days.
“At six weeks old, Kiptyn had three seizures all in a row. Usually he had one right after he woke up from a nap. So, they were frequent, but this one just kept going.”
Collicutt called 911 and Kiptyn was taken to PCH and then airlifted to the IWK.
“I was worried... All sorts of things run through your mind.”
Nearly five months after his birth, Kiptyn was diagnosed with a pathogenic mutation in the KCNQ2 gene, a diagnosis only one in 80 people worldwide have. It can result in neonatal epilepsy to neonatal epileptic encephalopathy (brain disorders that can manifest into cognitive, behavioural and neurological defects).
“After the three seizures, he was put on medication which eventually stopped his seizures entirely. He’s been seizure free since July 7, 2012.”
But the effects of the seizure were severe.
“At worst we were told he would have a learning disability. But Kiptyn can’t walk, feed himself, talk or sit up. He doesn’t have the muscle definition. He needs 24-hour care.”
Now nearly five years old, Kiptyn leads as normal a life as possible, said Collicutt.
“He has a wheelchair. He goes to school at École-sur-Mer, where he has a one-on-one teacher. They go through physio exercises and occupational therapy. He likes to be around his friends. He has one classmate stay with him every lunch so he’s not by himself.”
But travelling with Kiptyn has become more difficult. He is quickly outgrowing his car seat and transporting him to and from the car is not only difficult for his family but uncomfortable for Kiptyn.
“Our van is old and has too many kilometres on it to be converted to a wheelchair accessible vehicle. Conversion alone costs $20,000. A new van would cost $60,000 and conversion.”
When Maurice Hashie heard about the success of the recent Christopher Cross Requests fundraiser, he contacted organizers and asked if it would be OK to use it as inspiration for the Wellington and Area Requests, a fundraiser to help Collicutt and her family get a wheelchair accessible van.
“He has been so helpful. It’s not easy to ask for help and we probably wouldn’t. But to know how many people have been donating, people who are total strangers, just because they want what’s best for Kiptyn, is really special.
“To have someone in your community ask for help on your behalf means a lot.”
The Facebook group, Wellington and Area Requests, began on March 13 and ends midnight on April 3.
People can participate by requesting someone to do a song and send a $5 minimum donation via e-transfer to firstname.lastname@example.org or email@example.com.