Josiah Scheibe

JoJo will be 4 years old this October. He lives with his parents and 1 year old sister, Savannah (Savvy). He loves music, swimming in the pool or ocean, playing with Savvy and cuddling with family. JoJo has brought so much joy and love to our family and has taught us how to live each day to the fullest, being grateful for every smile and laugh he shares with us.

By JoJo’s first birthday, he was diagnosed with an extremely rare genetic disorder H-ABC. H-ABC is a type of leukodystrophy, a group of conditions that affect the white matter of the brain. These diseases damage the myelin sheath, which surrounds and protects the nerve cells in the brain and spinal cord and speeds transmission of messages between cells. This condition reduces the size and function of the basal ganglia and the cerebellum. As a result, people with H-ABC often have motor problems, including stiffness of the muscles and joints, low muscle tone, difficulty with controlling movements, and problems with balance and coordination.

We noticed symptoms when JoJo was not reaching milestones of holding his head up, rolling over and sitting up on his own and after a series of MRI and genetic testing, the devastating news that Leukodystrophy was causing this was confirmed. There is no new cure for H-ABC, but JoJo has the best team at Children’s Hospital of Philadelphia that specialize in this rare disorder and is working on clinical research for his specific type.

As a result of his diagnosis, JoJo has and will continue to experience cognitive, physical and developmental challenges. As to be expected, the financial burden of meeting JoJo’ needs is great.

While insurance does help cover some of the cost, there is still quite a bit that is not covered; a wheelchair accessible vehicle being one of them. An accessible van will relieve the burden and difficulty of transporting JoJo to and from medical appointments, therapies and for other everyday needs. An accessible van will also allow JoJo to be more comfortable in his wheelchair instead of using a car seat. Due to his increased tone throughout his body, his left hip is completely dislocated, and the right hip is partial. Sitting straight up in car seat causes pain while his wheelchair is tilted back to provide more comfort.

JoJo and his family have chosen to seek support from family, friends and community through Help Hope Live toward the cost of purchasing a wheelchair accessible van. Please consider helping him and his family reach their goal in order to provide this need for JoJo!

Help Hope Live assures fiscal accountability of funds raised and tax deductibility for contributors. Contributors can be sure donations will be used to pay or reimburse medical and related expenses. To make a tax-deductible donation to this fundraising campaign, click on the Give button.
For more information, please contact Help Hope Live at 800.642.8399.
Thank you so much for your support!

For more information about Leukodystrophy H-ABC:

https://www.chop.edu/conditions-diseases/hypomyelination-atrophy-basal-ganglia-and-cerebellum-h-abc

https://rarediseases.org/gard-rare-disease/hypomyelination-with-atrophy-of-basal-ganglia-and-cerebellum/

Josiah has chosen to fundraise for Help Hope Live in part because Help Hope Live assures fiscal accountability of funds raised and tax deductibility for contributors. Contributors can be sure donations will be used to pay or reimburse medical and related expenses. To make a tax-deductible donation to this fundraising campaign, click on the Give button.

For more information, please contact Help Hope Live at 800.642.8399.

Thank you for your support!
JoJo xoxox