Jayden's Wheels!

My son Jayden is a vibrant, happy, and loving 14 year old with cerebral palsy, which he was diagnosed with at about 2 years of age. He is non-verbal and he can't walk, and his ability to sit on his own is limited. He is completely reliant on others to go from place to place. Someone reached out to me asking if I'm open to financial help, and she offered to help me with a fundraiser, so here we are. Recently, a g-tube was placed in Jayden's abdomen, in hopes of helping him gain weight, and ot has been working!! Weight gain, while welcome, means even more toll on my back, and it means his safety and mine are further compromised whenever we travel. As Jayden's primary caregiver, I constantly struggle with transporting him. We have done a fundraiser before, and we were able to get a van, but it was older, wasn't accessible, and we have since had to scrap it due to constant repairs which were costing more than the van was worth. We use an Impala for transportation now, which means every time we go anywhere, I have to put Jayde in the vehicle, then disassemble the chair, and get it into the trunk. Then, when we get where we're going, we have to do everything in reverse.  The frequent disassembling and reassembling of his chair puts it at constant risk of breaking. Furthermore, the effort required for the whole process is incredible. My back is in constant pain, and I often find myself saying "no" to anything requiring travel so I can avoid the monumental difficulties of taking Jayden anywhere. I don't want either of us to be isolated, but combating isolation is hard when traveling is risky and draining. Medicaid can help with vehicle modifications in two ways: 1. They can pay to add after market modifications to an unmodified vehicle. 2. They can apply the cost of a conversion kit toward the total purchase price of a previously modified vehicle. I don't own a vehicle that can be modified for Jayden and I have been fighting Medicaid since June for a previously modified vehicle. Unfortunately, their policy limits which conversion items they will pay for on a previously modified vehicle. There are certain items we need such as a lowered floor that Medicaid won't pay for, despite the fact nearly ALL conversions kits come with one and despite the fact a wheelchair won't fit into a standard van without lowering the floor. We do not want to trade the Impala in, because we really need two vehicles. We have been making do with one, since my signficant other has a vehicle from his job, but it can only be used for job-related activities. If he's off while I'm working and needs to go anywhere, he is stuck.  He has two kids of his own, one of whom has a medical condition which could result in the need for immediate medical attention at any time. I never want to be in a position where one of our kids' needs can't be addressed because one of us is away with our one vehicle. Also, we owe more than it's worth, and we really don't want to go upside down with it, if that can be avoided. If we reach our goal, I can either buy a vehicle outright, or we can pay off the Impala and have money left to put a hefty down payment on a van that will meet our needs. Either scenario would be amazing and we'd be ever grateful!  Having safe, reliable, and accessible transportation would mean I could take Jayden anywhere without worry of hurting him, myself, or his chair.  It would mean maybe my back can last just a little bit longer. It would mean Jayden and I being able to participate in activities I might otherwise say "no" to. It would mean less isolation and more inclusion for Jayden. It would mean the entire world to us. 
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Rebecca Fontes
Goldsboro, NC

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