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Hey all of you who would like to help a little guy who has the most cheerful attitude of anyone I know. We are needing to purchase a vehicle with a power wheel chair ramp, preferably a BraunAbility Power Wheelchair Van because they are highly recommended. Vans with wheel chair ramps are not cheap; brand new ones can be as much as $70,000!! We have never paid over $18,000.oo for a vehicle so I nearly cried when I saw how expensive these vans are. (Don't even ask what a truck with a ramp would cost!) Its a given that we won't be getting a brand new one but we definitely want a used one with less than 50,000 miles and around 4-5 years old. Josh received a new power wheel chair that is much heavier than his older wheel chair. With the old van we have (almost 300,000 miles), it is not able to transport his new power wheelchair, so the power wheelchair stays overnight for now at school. We had to get it to school with an old landscape trailer! Josh needs to be able to ride his new power wheelchair up into a vehicle so that the new wheel chair can be locked down securely. He needs this for upcoming surgeries to Charleston, he needs it for prom night, and he needs it for college next year.
This past year and especially recent few months we have been seeing a decrease in Josh's ability to easily and efficiently move from his wheel chair to his bed or in the bathroom. He also has been experiencing muscle fatigue and stiff joints as this is an ongoing progression of his condition (Kniest dysplasia syndrome). As I have done for many years, I usually have been able to lift Josh easily up into a car seat in our family van but as his weight has slowly been increasing, so has the strain to my lower back. It is necessary to purchase a van that has a ramp in which his wheel chair can be rolled up into the van easily. This would be ideal as he has several upcoming surgeries in Charleston, SC (which is 3.5 hours from our home in Upstate, SC).
The reason for these upcoming surgeries at MUSC (Medical University of Suth Carolina at Charleston) is that Josh is beginning to lose his hearing due to a condition that is part of Kniest Syndrome. Persons who survive Kniest Syndrome are rare and even if they survive infancy & childhood, some persons with Kniest are at a higher risk for going deaf or blind or both later in life. If we can get Josh to these upcoming surgeries, we can prevent further hearing loss. It is vital that this little guy retain as many of the 5 senses he was born with as his life is difficult enough without the added stress of losing such an important function.
We are a small family that live in a wheel chair accessible middle class home but as the care for Joshua requires more time, it is difficult for myself as his primary care giver to pursue full time employment. For several years now, I have been obligated to work part-time jobs in an effort to be available for caring for Josh as much as possible. Recently, we have been renting out a portion of our home to help pay for expenses. We are asking for donations to offset the cost of a used van with a wheel chair ramp and also the cost of some medical expenses and travel costs to Charleston for his surgeries.
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