Jack's Stemcell Transplant

Story

Our son Jack is the happiest, funniest most caring boy you'll ever meet. He loves trucks and his dog zozo. He's obsessed with his big sister and loves snuggles, hugs and kisses. He is so incredibly brave which is amazing because he was born with a rare genetic condition called X-linked Adrenoleukodystrophy. Adrenoleukodystrophy (ALD) is a genetic disease that causes a build up of very long chain fatty acids (VLCFA) in the brain, nervous system and adrenal cortex. The build up causes a breakdown of myelin, the protective sheath covering the nerves causing brain damage and seizures. This also damages the nerves ability to transmit the information to other parts of his body ultimately causing loss of ability to walk, talk, eat or function atall. Without treatment this disease will take his life. We were originally told he was too young to be symptomatic but at just 3 years old his last MRI showed the opposite. We were just notified by his doctor that he needs a Stemcell Transplant and search for a donor has started. The Children's hospital of Eastern Ontario (CHEO) does not provide this so Jack and I will be temporarily moving from Ottawa to Toronto for transplant at Sick Kids Hospital. Jack and I will be there for 3-4 months while he has chemo and the transplant. The hope is this transplant stops the progression of the disease giving our son the chance to have a long life. I am a full-time caregiver for him and as hard as my husband works, he will not be able to cover our expenses as well as the extra expenses. It breaks my heart to have to ask like this but without all the help we can get, this could potentially bankrupt us. Donations will be used for travel expenses, my necessities while in Toronto, household expenses back in Ottawa, medications, appointment expenses, home care etc. We also have a 7 year old who will be living with my mom while I'm gone. My mother is retired and has disabilities so we hope to help her with food and clothing cost as well as transportation to and from school and mental health support for our daughter while she deals with this huge change. Once I'm able to bring Jack home, I will have to travel back to Toronto multiple times for appointments as the first 12 months post transplant have a high risk for rejection and infection. If your unable to donate you can help us by sharing his story. You can follow us through Jack's Facebook Page. Thank you so much to everyone and please keep our family in your thoughts and prayers.