in Bristol, RI. She has everything she needs except safe transportation for herself with mom and dad.
Jessie has cerebral palsy, with a seizure disorder, and significant cognitive delay. Her educational level may be limited, but her social levels are limitless. Her mainstay in life is social, and Special Olympics is a huge part of this for her. After years with her home town team, The Pawtucket Pacers, we made the difficult decision to join the Bristol County Baysiders, because both mom and dad's back issues caused Jessie to miss too many practices to compete. Bristol's practice times were on days and times that we could go together to lessen the impact on our backs and keep Jessie in competition. She competes in the 25 Meter Walk. Jessie has a walker with 4 wheels and arm troughs to help support her weight that she uses for up to 50 yards or so up to 3 times a day. Otherwise, she is in a wheelchair for transporting. She even has a chair that can go into the water and float, so great for camping and swimming; works over all terrain including snow.
As we have grown older, the strain of lifting Jessie in and out of vehicles and apparatus has limited our family activities greatly, and has even interfered with routine Doctor appointments for her. Especially in the winter months when lifting outside is just not safe. One of her favorite vacations, camping, has ceased altogether due to the physical strain on us.
Even when we were younger and healthier, day trips were limited to 4 hour spans because Jessie is in diapers, and there is no place to change an adult in diapers in any public venue if the wearer requires a prone position to do so.
This past year, Brian (dad) was out of work for health issues and we thought with panic that Jessie's social life was going to be non existant with our transport problems, and we started this campaign to help toward a modified van to help us keep Jess active and involved. We have been humbled greatly by the support of our families, and Liz(mom) especially by her co-workers. Words cannot convey the feelings that came with the outpouring of support showed to us.
Because of of the limits diaper changing, Jessie's needs couldn't be met with a typical handicapped van, the modifications take away a lot of floor space and would not be useful as a " changing area ". We realized we needed to look at an alternative that would last and be most useful to regain an actively involved family life, and settled on a cargo van style vehicle we could order to spec without modification to the frame. We have been incredibly fortunate again, with Brian regaining his career and Liz's work schedule more flexible, that we are able to fulfill this order ourselves. But, a lift needs to be installed, cargo style again, allowing full floor space for an actual changing bed and plenty of room for camping!
Although it may not as pretty, this setup will be all function for Jessie. The weather will no longer be an issue, day trips will really be all day without renting a hotel room (something we've gotten used to doing - just for a changing spot). And the most exciting part for us all will be camping again as a family.
We we have modified our goal to just the cost and installation of the lift. Thanks to everyone for checking in.
DonationsSee top donations
- Ann Flener
- Pawtucket City Employees
- L. Spooner
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