With Love to Oliver (with SCN8A)
Donation protected
Ollie, our nephew, is the sweetest little two year old you'd ever meet. Ollie has a genetic mutation, SCN8A. Never heard of it, right? That's because only a handful of people in the entire world have been diagnosed with this severe epileptic condition. SCN8A is a gene mutation that's so new to the medical community, that there is an absence of significant research or reliable treatment options for Ollie's rare disorder.
Ollie started having seizures when he was an infant. Since then, he has had periods of time without seizures, but they never last long. Ollie has global developmental delays, but he worked hard to gain the ability to walk and, although he was non-verbal, he learned basic sign language to indicate what he wanted. He was full of kisses and hugs, and his smile would light up anyone's heart.
All of that changed recently when Ollie had a series of seizures that landed him at MacMaster Children's Hospital. Oliver has lost all of the functions he worked so hard for. Every day is a challenge, as Ollie struggles. He has a feeding tube to deliver his special ketogenic diet, oxygen for when he needs it, and and IV to deliver his many drug therapies. Ollie's parents, Andy and Maly, have had to endure months of long hospital stays, sleepless nights, driving back and forth from Kitchener to Hamilton, eating-on-the-run, and managing work and their daughter, Audrey.
To say it has been undue hardship would be a great understatement. That's where community comes in. When a family member is critically ill, we struggle to do something to help. Allievating the costs of medical supplies, medications, travel expenses, lost wages, and hospital stays will mean less time spent worrying about bills, and more time dedicated to supporting Oliver. Thanks so much for your help.
Ollie started having seizures when he was an infant. Since then, he has had periods of time without seizures, but they never last long. Ollie has global developmental delays, but he worked hard to gain the ability to walk and, although he was non-verbal, he learned basic sign language to indicate what he wanted. He was full of kisses and hugs, and his smile would light up anyone's heart.
All of that changed recently when Ollie had a series of seizures that landed him at MacMaster Children's Hospital. Oliver has lost all of the functions he worked so hard for. Every day is a challenge, as Ollie struggles. He has a feeding tube to deliver his special ketogenic diet, oxygen for when he needs it, and and IV to deliver his many drug therapies. Ollie's parents, Andy and Maly, have had to endure months of long hospital stays, sleepless nights, driving back and forth from Kitchener to Hamilton, eating-on-the-run, and managing work and their daughter, Audrey.
To say it has been undue hardship would be a great understatement. That's where community comes in. When a family member is critically ill, we struggle to do something to help. Allievating the costs of medical supplies, medications, travel expenses, lost wages, and hospital stays will mean less time spent worrying about bills, and more time dedicated to supporting Oliver. Thanks so much for your help.
Organizer
Jain Redfearn
Organizer
Kitchener, ON
