Wheels for Thomas
Donation protected
Thomas is 19 years old. He was diagnosed with Duchenne Muscular Dystrophy when he was 9 years old. This type of Muscular Dystrophy is one of the most researched due to its progressive nature. It is a muscle wasting disease. His body doesn't reproduce the protein dystrophin, which is required for muscle production. And based on our own experience, there hasn't been any new leads in research that can be of assistance for his particular type due to the depleted exon he has. In the beginning of his diagnosis we were told he should be put on prednisone. The pros and cons of this medication led us to choose another path. We decided we wanted to be more aware of our whole family's health and take a holistic approach. We researched alternative treatments. Some of which have become integrated into our everyday lives.
At the age of 12 he lost the ability to walk and became wheel chair bound. We managed over the years to grow as a family to accommodate Thomas' needs of basic and comfortable living. We've wanted to make sure he felt he could be involved in whatever activities he wanted. We've wanted him to experience life. Simple things like going to the beach, the mountains, road trips and the like. We've done our best to make sure he is able to go to any appointments that can benefit his quality of life. With that, I have had to handle much of the lifting and transporting with my own strength. He's still growing! It has become harder to lift him into the vehicles we use to go places. We haven't had a vehicle that he could ride his power chair into. Although he loves his manual chair, the power chair gives him the freedom to move this way or that.
And that leads us to our need. We want to purchase a van that can be modified with a lift so that he can easily get in or out of SAFELY. That is the key. SAFETY. The average cost for a modified van with warranties is $70,000. Unfortunately, the programs that we have been told to apply to won't work for our family. The reason for this is because while he has a muscular wasting disease, he is relatively healthy. So he doesn't qualify. Other programs required sole commitment to their platform. That takes us out of the driver seat. We know what is best for our son and our family. A handicap accessible van is not an affordable need. Thomas' father and I both work part time in order to be the primary caregivers. There has been great freedom in this. However, neither of us make a great deal of money. We can't go into debt but greatly want to provide this need for Thomas' quality of life and enjoyment of it.
If you feel led to help us obtain this dream of ours, Thomas and the rest of our family would greatly appreciate it.
UPDATE: We have done a great deal of research on vans and lifts/ramps. We determined that we couldn't justify the cost of the commonly modified vans. We have chosen to purchase a Nissan NV and have it modified with a lift. The MSRP for the van is just under $38,000 (doesn't include tags, title and taxes). There is a great deal of room in this van for Thomas to get situated. There are also going to be enough seats for the whole family to go places together. It's got a great warranty and of all the research we've done we haven't seen or heard one negative thing about it. Nissan also has a mobility reimbursement program. We wouldn't have to raise nearly as much money for the NV! The modification quotes are $8500 and $10,100 before tax.
At the age of 12 he lost the ability to walk and became wheel chair bound. We managed over the years to grow as a family to accommodate Thomas' needs of basic and comfortable living. We've wanted to make sure he felt he could be involved in whatever activities he wanted. We've wanted him to experience life. Simple things like going to the beach, the mountains, road trips and the like. We've done our best to make sure he is able to go to any appointments that can benefit his quality of life. With that, I have had to handle much of the lifting and transporting with my own strength. He's still growing! It has become harder to lift him into the vehicles we use to go places. We haven't had a vehicle that he could ride his power chair into. Although he loves his manual chair, the power chair gives him the freedom to move this way or that.
And that leads us to our need. We want to purchase a van that can be modified with a lift so that he can easily get in or out of SAFELY. That is the key. SAFETY. The average cost for a modified van with warranties is $70,000. Unfortunately, the programs that we have been told to apply to won't work for our family. The reason for this is because while he has a muscular wasting disease, he is relatively healthy. So he doesn't qualify. Other programs required sole commitment to their platform. That takes us out of the driver seat. We know what is best for our son and our family. A handicap accessible van is not an affordable need. Thomas' father and I both work part time in order to be the primary caregivers. There has been great freedom in this. However, neither of us make a great deal of money. We can't go into debt but greatly want to provide this need for Thomas' quality of life and enjoyment of it.
If you feel led to help us obtain this dream of ours, Thomas and the rest of our family would greatly appreciate it.
UPDATE: We have done a great deal of research on vans and lifts/ramps. We determined that we couldn't justify the cost of the commonly modified vans. We have chosen to purchase a Nissan NV and have it modified with a lift. The MSRP for the van is just under $38,000 (doesn't include tags, title and taxes). There is a great deal of room in this van for Thomas to get situated. There are also going to be enough seats for the whole family to go places together. It's got a great warranty and of all the research we've done we haven't seen or heard one negative thing about it. Nissan also has a mobility reimbursement program. We wouldn't have to raise nearly as much money for the NV! The modification quotes are $8500 and $10,100 before tax.
Organizer
Paula Simons
Organizer
Middlesex, NC