$2,995 CAD raised
·22 donations

Accesible Van for Denver
Donation protected
Sometimes life deals us tough cards to handle, but we do our best With what we have, and sometimes we need help.
I'll tell you a bit of our story.
In 2009 , I welcomed my second son ( fourth child ) to the world. He had been diagnosed before birth, with a condition called Hemimegalencephaly. We were told there was a 50% chance that he may never leave the NICU, those are pretty hard words to hear. Well he surpassed the specialists expectations & was home 6 days after being born. I know that might not seem especially spectacular, since lots of babies spend time in NICU & go home to live "normal" lives.
For Denver this was just the start of his story. After going home, we had to make frequent trips to Alberta Children's Hospital, for him to undergo tests & see a variety of specialists. Due to his condition, he was having many seizures each day, sometimes up to 200. It was decided that he'd undergo a radical surgery in which half his brain would be "disconnected " to help control the seizures. So at 7 months old, I handed my sweet baby boy over to the neurosurgeon for the first half of the operation. Because he's such a little fighter, he recovered very fast and we were home 2 weeks later. At his first follow up appointment, they noticed a complication on the MRI & decided he needed to go back into surgery to have a VP shunt placed to drain the extra fluid from his brain.
After a few months they decided he was strong enough to handle the second part of the hemispherectomy surgery, and so at 15 months - I handed him back over to the surgeons. After this part he lost most of his ability to swallow and ended up needing a feeding tube. He also developed a very rare blood infection & had everyone scared for his life. Again on his own time he bounced back and fought hard.
At almost 3 years old it was suggested that we travel to NIH, in Bethesda, MD, to see another team of specialists. There the suspicion that Denver may also be affected by Proteus syndrome, was confirmed. It's an extremely rare condition, with less than 200 cases ever diagnosed in the whole world. It causes issues with overgrowth throughout his body. Some cells have a genetic mutation that doesn't tell them to stop growing.
Through the years Denver has had many surgeries, I believe 36, but have lost count. Last year he spent the majority of 8 months in the hospital. Including having rods placed in his spine, along with spending 3.5 months in halo traction, dental surgery, hand surgery, ear surgery, a shunt revision, sepsis, and intercranial pressure monitoring twice.
He is completely dependant on someone to look after all his needs & is wheelchair bound.
I have 3 other kids. 2 of them have other major medical issues. We try to be an active family, but it's getting increasingly hard to accommodate taking Denver with us. Having a wheelchair van, would give him so much more freedom to come with us and to do things as a family.
I know this past year has been tough for many people, but we are asking for help to keep Denver mobile & as involved in family activities. As well he has many many medical appointments in Calgary, which is around 450km round trip. Some months it's as many as 8 days of appointments.
Any donations are greatly appreciated.
I'll tell you a bit of our story.
In 2009 , I welcomed my second son ( fourth child ) to the world. He had been diagnosed before birth, with a condition called Hemimegalencephaly. We were told there was a 50% chance that he may never leave the NICU, those are pretty hard words to hear. Well he surpassed the specialists expectations & was home 6 days after being born. I know that might not seem especially spectacular, since lots of babies spend time in NICU & go home to live "normal" lives.
For Denver this was just the start of his story. After going home, we had to make frequent trips to Alberta Children's Hospital, for him to undergo tests & see a variety of specialists. Due to his condition, he was having many seizures each day, sometimes up to 200. It was decided that he'd undergo a radical surgery in which half his brain would be "disconnected " to help control the seizures. So at 7 months old, I handed my sweet baby boy over to the neurosurgeon for the first half of the operation. Because he's such a little fighter, he recovered very fast and we were home 2 weeks later. At his first follow up appointment, they noticed a complication on the MRI & decided he needed to go back into surgery to have a VP shunt placed to drain the extra fluid from his brain.
After a few months they decided he was strong enough to handle the second part of the hemispherectomy surgery, and so at 15 months - I handed him back over to the surgeons. After this part he lost most of his ability to swallow and ended up needing a feeding tube. He also developed a very rare blood infection & had everyone scared for his life. Again on his own time he bounced back and fought hard.
At almost 3 years old it was suggested that we travel to NIH, in Bethesda, MD, to see another team of specialists. There the suspicion that Denver may also be affected by Proteus syndrome, was confirmed. It's an extremely rare condition, with less than 200 cases ever diagnosed in the whole world. It causes issues with overgrowth throughout his body. Some cells have a genetic mutation that doesn't tell them to stop growing.
Through the years Denver has had many surgeries, I believe 36, but have lost count. Last year he spent the majority of 8 months in the hospital. Including having rods placed in his spine, along with spending 3.5 months in halo traction, dental surgery, hand surgery, ear surgery, a shunt revision, sepsis, and intercranial pressure monitoring twice.
He is completely dependant on someone to look after all his needs & is wheelchair bound.
I have 3 other kids. 2 of them have other major medical issues. We try to be an active family, but it's getting increasingly hard to accommodate taking Denver with us. Having a wheelchair van, would give him so much more freedom to come with us and to do things as a family.
I know this past year has been tough for many people, but we are asking for help to keep Denver mobile & as involved in family activities. As well he has many many medical appointments in Calgary, which is around 450km round trip. Some months it's as many as 8 days of appointments.
Any donations are greatly appreciated.
Donations
Organizer
Kendra McNutt
Organizer
Rocky Mountain House, AB