Go Gavin, Go!
Donation protected
Gavin is a totally awesome 5 year old, who happens to have PMD.
PMD is a rare leukodystrophy. It affects all his nerves and in turn his muscles.
http://pmdfoundation.org/?page_id=13
But the lack of muscle tone doesn't stop him.. He loves to go go go. The faster the better. He is such a wild boy at heart!!
Gavin's smile always brightens my day. He has over come so many struggles and is a truly happy kid. He is the son of one of my dearest freinds Jessica , who is mom to not just Gavin but 9 year old "B" and 3 year old Macie (a.k.a. Eena). Jessica is always in search of ways to give Gavin an amazing childhood experience. Because of the rarity of his disorder, often insurance clamis are initally denied, general medical and education professionals are just not familiar with PMD.
Jessica submitted Gavin to an awesome program at the University of Delaware that adapts power wheels cars for kids just like Gavin called Go Baby Go . He was accepted. The issue now is getting the insert he needs to be able to use the car.
Gavin was asked to participate in a follow up to get all his measurements and the things he will need modified. The workshop is Dec. 5th. But since he was taken so quickly, we need to order his supportive insert ASAP. U of D will make the alterations cusotm to Gavins needs but they do not provide the support system he needs to sit upright. Gavin has such poor tone with his leukodystrophy, he will need extra support added. There is seat is from Fire Fly called the Go To Seat . This seat can be used for many things not just the car. It can also be a supportive seat to sit on the floor. But the equipment is over $500 and needs to be order quickly so we can get it here by the 5th. Since he needs this so soon, Jessica does not have the time put it through his insurance. Which even if everything was picture perfect with the claim, it wouldn't make it in time.
Anything above the cost of this chair will go to other tools for Gavin to help him keep up with his friends and sibiligs and enjoy life to its fullest!
PMD is a rare leukodystrophy. It affects all his nerves and in turn his muscles.
http://pmdfoundation.org/?page_id=13
But the lack of muscle tone doesn't stop him.. He loves to go go go. The faster the better. He is such a wild boy at heart!!
Gavin's smile always brightens my day. He has over come so many struggles and is a truly happy kid. He is the son of one of my dearest freinds Jessica , who is mom to not just Gavin but 9 year old "B" and 3 year old Macie (a.k.a. Eena). Jessica is always in search of ways to give Gavin an amazing childhood experience. Because of the rarity of his disorder, often insurance clamis are initally denied, general medical and education professionals are just not familiar with PMD.
Jessica submitted Gavin to an awesome program at the University of Delaware that adapts power wheels cars for kids just like Gavin called Go Baby Go . He was accepted. The issue now is getting the insert he needs to be able to use the car.
Gavin was asked to participate in a follow up to get all his measurements and the things he will need modified. The workshop is Dec. 5th. But since he was taken so quickly, we need to order his supportive insert ASAP. U of D will make the alterations cusotm to Gavins needs but they do not provide the support system he needs to sit upright. Gavin has such poor tone with his leukodystrophy, he will need extra support added. There is seat is from Fire Fly called the Go To Seat . This seat can be used for many things not just the car. It can also be a supportive seat to sit on the floor. But the equipment is over $500 and needs to be order quickly so we can get it here by the 5th. Since he needs this so soon, Jessica does not have the time put it through his insurance. Which even if everything was picture perfect with the claim, it wouldn't make it in time.
Anything above the cost of this chair will go to other tools for Gavin to help him keep up with his friends and sibiligs and enjoy life to its fullest!
Organizer and beneficiary
Jax Cusack
Organizer
Philadelphia, PA
Jessica Van Dellen
Beneficiary