Members of The Jackson Project team know first hand the devastation that a Leukodystrophy diagnosis brings and the grueling battle that these children and their families endure. We are motivated daily by how valiantly these children fight and the strength of the families fighting with them. We are working hard to put the organization in a position to support other affected families along their journey.
The following resources have been key in our journey with Krabbe:
It takes deep expertise to properly assess a child’s specific condition and counsel families on potential treatment options and expected outcomes when dealing with a rare disease. Having a specialist that fully understands the course of the disease and how it affects different patients is key to effectively managing their care and maximizing their quality of life. We were pointed to Maria Escolar, MD with the Program for the Study of Neurodevelopment in Rare Disorders at the Children’s Hospital of Pittsburgh. The program has focused on better understanding and improving the quality of life for children affected by rare neurodegenerative diseases for the last 15 years. Learn more about the program by following the link below:
Hunter’s Hope provides fantastic family support services including their annual Family and Medical Symposium. It provides families a unique opportunity to connect with one another as well as with scientists and doctors focused on better understanding and treating Krabbe and other Leukodsytrophies. This is truly a life changing event. Learn more about Hunter’s Hope and the great work they do by following the link below:
Judson is one our Krabbe heroes who has an incredibly powerful story. Judson’s Legacy is a ministry of faith and hope in suffering that shares the Gospel through Judson’s story as an expression of God’s grace in the midst of heartache. They also raise awareness of Krabbe disease and fund research for a cure. He and his family are an inspiration to The Jackson Project team. Learn more by following the link below:
Social Media Support Group:
There is nothing more isolating than a rare disease diagnosis. Trust that you are not alone. We found a group created for, and limited to, families immediately affected by Krabbe. This is a tight knit community filled with love, hope, and amazingly strong families. Beyond just the emotional support, the knowledge and experiences shared here have been critical in our journey.
With a neurological disorder like Krabbe, adaptive medical equipment can be a key component of maximizing development, maximizing comfort, and improving overall quality of life. There can be challenges gaining approval through insurance or obtaining medical equipment timely, so it is important to plan well in advance. Having a specialist that can help a family plan and advocate on the patients behalf for appropriate equipment can be a huge help. Some examples of medical equipment that have been key in caring for Krabbe patients:
- Pediatric Wheelchair/Stroller
- Suction Machine
- Oxygen Concentrator (Home and Portable)
- Oxygen Tanks
- Feeding Pump and Supplies
- Adaptive Chairs
- Cough Assist Machine
- Vest Airway Clearance Machine
Krabbe severely impacts motor function and muscle tone. Physical therapy can help engage muscles to minimize deterioration and maintain flexibility. It can also help reduce muscle tone and prevent painful contractures. Weight bearing exercises can help maintain bone density and proper joint development. The suck/swallow function required to eat is impacted, so speech therapy can be another effective treatment. Aqua therapy is Jackson’s favorite, and is also effective for reducing muscle tone. The buoyancy of the water can also help encourage volitional movement for patients that otherwise have very little (if any) voluntary movement. For patients who can’t sit or stand unsupported, the water provides an opportunity to be free of support which can be a soothing sensation.