Ehlers Danlos Disabled Family Seeks Government Grants For Medical Costs
by Erin
Tom and the children all suffer from a rare degenerative disease is called Ehlers-Danlos Syndrome that causes joint pain and deteriorating collagen surrounding the joints and ligaments. We were unaware of this genetic disorder until after my son Dillon was born and started missing milestones as a baby. At two years old, he started with joint dislocations. This brought us to Children's Specialized Hospital in Philadelphia where he was formally diagnosed with this health issue. We started therapies and went to all the specialists required to support his health care properly. At this point we started to realize that my husband was the carrier of the gene. He also had suffered from many surgeries due to collagen breakdown, as well as brain surgery for an arachnoid cyst. My husband has had 12 surgeries since both children were born. Dr. Brookes at UNDMJ in New Jersey diagnosed both my husband and my daughter Jordan with this deficiency. By the time Jordan was 9, we realized she was starting to have physical limitations and also had her thyroid shut down on her due to Hashimoto's thyroid disease. At that point we had blood work done that concluded Celiac Disease (damage to the intestine due to gluten intolerance) along with the thyroid disease. Since January our health coverage has changed and we are burdened with a policy that does not fully cover all of this family's needs for necessary care to maintain their well-being. We now pay a huge portion of our premium and all professional care is 20% our responsibility even for our blood work that is required every three months. We have necessary therapy needs and also much needed equipment to help with the quality of life that we cannot afford. My husband has been on disability every year for the last several years and he is our sole financial provider since my children need someone home for care on a daily basis. They struggle with joint pain and fatigue so both have missed about a month of school on many given days due to health problems. We have necessary therapy needs like a therapy pool and equipment like orthotics and a mobility scooter to preserve the quality of life. I had a job for 10 years that I was unable to keep due to the needs of my family and cannot be away from our household due to the nature of the needs of my children. My husband has and still works any overtime possible and does odd jobs for his Mom and she will contribute to some of our financial burdens but she is retired and does not have an abundance of money to help with. The church is also looking for financial support from us and has just closed their school due to financial distress. We need financial assistance with a mobility scooter for my son and a therapy pool at our home since it is the best form of therapy without damaging the body. This would allow us to stop incurring therapy co-pays and possibly some doctor co-pays and give us some quality of life being able to maintain a functional family. I am hoping there is some sort of grant to support our needs.
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