Wheelchair-Accessible Van For Josh
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Hello! I would like you to meet Josh! Josh is a generally go-lucky, happy guy with an amazing smile and contagious laugh! 20 years ago Josh entered this world as truly a one of a kind! He was born with a rare genetic disorder known as Tetrasomy 9q with a cleft palate. When the doctors laid him on my chest they said that all they could tell us was that he has a rare chromosome disorder, that he would need to see a geneticist and children like him often suffer from failure to thrive. So the day we were released from the hospital he had his first specialist appointment at Pittsburgh Children's Hospital. The geneticist didn't have a whole lot more information to give us other than he had a diagnosis and that in the worldwide database of rare genetic disorders there was no found case like him! So we were told there was no exact plan that could be formed for his care. There were a lot of possible this and possible that's. He could be physically delayed but mentally fine. He could be mentally delayed but physically not. He could be medically fragile or he could be perfectly healthy. There was no way of knowing 100% what to expect. So with a heart full of love, faith in God's will, and determination to give him the best life he could have no matter how long or what laid ahead, we took Josh home to begin this beautiful journey with our little bundle of blessings! And what a blessing he has been! I can't even begin to imagine a life without his amazing hugs, sheer determination, and unconditional love!
Fast forward a few years later to the age of two, (remember he wasn't to make it this far?) his cleft palate was fixed and then a feeding tube was placed due to GERD and aspiration pneumonia. The Drs. were all impressed that he was still with us but gave us an updated life expectancy of 5 years. Around 6 years of age, he had his first of many right hip dysplasia surgeries and received his official diagnosis of Arthrogryposis. Josh also started special needs school and got his first gait trainer. He seemed to progress well and we were all very hopeful he would walk, but that was not the destiny set before Josh. Over the years his arthrogryposis has progressed and the possibility of surgeries was addressed. But the surgeries needed would be painful, entail a lot of major reconstruction of his knees, nerves, and muscles. Plus it's not even guaranteed to be a success and we could be back in a few years to where we are now, so that option is not viable. As Josh has gotten older the wheelchair has become his primary means of transport and as he gets bigger it is becoming more difficult to transport him in the vehicle I have now. I have to lift him out of his chair and into the car seat and then lift the wheelchair into the back, which is becoming more difficult the older I get. A wheelchair-accessible vehicle would make transporting for doctor, therapy, and other appointments much easier as well as granting a bit more freedom for family road trips. Unfortunately, wheelchair-accessible vehicles cost more than most vehicles and current finances don't allow for us to have the means to come up with the full purchase price of a van that is currently available. So we are trying to fundraise for the remaining balance needed as soon as possible. Thank you for allowing me to share our story with you!
Fast forward a few years later to the age of two, (remember he wasn't to make it this far?) his cleft palate was fixed and then a feeding tube was placed due to GERD and aspiration pneumonia. The Drs. were all impressed that he was still with us but gave us an updated life expectancy of 5 years. Around 6 years of age, he had his first of many right hip dysplasia surgeries and received his official diagnosis of Arthrogryposis. Josh also started special needs school and got his first gait trainer. He seemed to progress well and we were all very hopeful he would walk, but that was not the destiny set before Josh. Over the years his arthrogryposis has progressed and the possibility of surgeries was addressed. But the surgeries needed would be painful, entail a lot of major reconstruction of his knees, nerves, and muscles. Plus it's not even guaranteed to be a success and we could be back in a few years to where we are now, so that option is not viable. As Josh has gotten older the wheelchair has become his primary means of transport and as he gets bigger it is becoming more difficult to transport him in the vehicle I have now. I have to lift him out of his chair and into the car seat and then lift the wheelchair into the back, which is becoming more difficult the older I get. A wheelchair-accessible vehicle would make transporting for doctor, therapy, and other appointments much easier as well as granting a bit more freedom for family road trips. Unfortunately, wheelchair-accessible vehicles cost more than most vehicles and current finances don't allow for us to have the means to come up with the full purchase price of a van that is currently available. So we are trying to fundraise for the remaining balance needed as soon as possible. Thank you for allowing me to share our story with you!
Organizer
Lucinda Richardson
Organizer
Williamsburg, PA
