Josiah is an amazing little boy who loves music--both listening to it and making it, loves video games, enjoys swimming, loves roasting marshmallows on the campfire in the backyard, likes canoe rides, is a snuggler, a lady charmer, and a master joker. He likes playing with, and fighting with, his big brother. He also daily meets the challenges of Cerebral Palsy, brain damage (resulting in some intense learning, emotional, and behavioral challenges), hydrocephalus (excess fluid in his brain), lung issues, and vision challenges (nearly blind in one eye).
He already has decided he wants to be a DJ on the radio when he grows up, and likes looking for entertainment news on YouTube, especially related to Justin Beiber, Katy Perry, Adele, Cee Lo Green, Maroon-5, and Melissa Ethridge-- some of his favorite music artists. Josiah also likes to go places and be out in the community. He does walk with a walker for short distances. Due to his CP, he has limited use of his legs and his left arm. He has fought hard to overcome his challenges and though he gets frustrated and angry about what he is unable to do, he never gives up.
As he is getting older, his bones are growing quickly. Even though he is gaining mobility skills with the help of many therapies, his body is getting tighter and less flexible as he grows. So even though skills are increasing, physical abilities are decreasing. The tightness of his muscles is also deforming bones and joints as he grows. Over the past few months, multiple specialist have talked to us about the upcoming need for surgery on his legs. His femurs, the large bone in the thigh, are twisting, and the hip sockets are flattening due to his increased tone. His hamstrings are too short and he can no longer straighten his knees out all the way, and this will continue to get worse as he grows. His heel cords are short and he is now unable to be pushed into a flat position with his feet, so he is more and more on his toes as the cords are short enough they will not allow the heel to be flat on the floor. This is also getting progressively worse. His left arm is very tight and has limited function, the elbow constriction getting worse as he grows.
Within the next year, he is slated to have surgeries to essentially rebuild his legs. Both legs will be removed at the hip, the hip sockets will be rebuilt with plates and screws. The femurs will be cut and repositioned to account for the twist, and then screwed back together and positioned in the new hip sockets. The hamstrings and heel chords will be cut and lengthened with tissues from other areas of his body. He will be in a full body cast for many months following these surgeries. Rehabilitation after that time will be long and difficult. He will have to relearn how to walk and relearn how to use the toilet. He is muscles will deteriorate during the long casting and healing, so the process of building strength back is going to take a long time.
For that reason, his doctor ordered him a motorized wheel chair that requires only the use of his good hand to maneuver, as these surgeries will take away all forms of mobility and independence for him. He has been doing very well with his chair and has learned to use it well, which is important as he will be able to have more independence and continue his life with self direction and self confidence. The motorized chair helps him now, as he tires too quickly with his walker to enjoy activities such as a zoo, the fair, or even shopping and playing at the park with friends. The motorized chair has given him greater independence in his current life, to explore the world in a more self directed way. In order to use the wheelchair outside of the home, he needs a wheelchair accessible van, as the motorized chair can not be broken down to fit in a car, and is too heavy to lift safely in and out of a vehicle. Currently, he takes it back and forth to school and we use it around town, but are unable to take it to fun places where it will benefit him most.
So hopefully we will be able to raise funds for a used, but in good condition, van. Brand new they cost between $50,000-$70,000. Used ones with lower mileage (under 70,000 miles) run around $15,000-$25,000, plus tax, title, registration and insurance. So I am hoping to raise enough to cover the cost of the vehicle and the additional costs of getting it on the road. Please share Josiah's story with anyone you can, and help us raise the funds for a vehicle that will help him be more independent and able to embrace life.
DonationsSee top donations
- amber claydon
- Missie Barry
- Sara Thorne
- The Blake's
#1 fundraising platform
More people start fundraisers on GoFundMe than on any other platform. Learn more
In the rare case something isn’t right, we will work with you to determine if misuse occurred. Learn more
Expert advice, 24/7
Contact us with your questions and we’ll answer, day or night. Learn more