As if the overwhelming emotional challenge of raising and caring for a profoundly disabled child weren’t enough, the financial burden is virtually incalculable.

One might think a decent insurance policy covers a lot, but it is hard to believe the breadth and scope of uncovered expenses. A primary example is that Gabi had no choice but to keep working – and full time – in order to maintain their insurance coverage. And so John put his teaching career on hold and is home caring for Elliott full time. No coverage for lost income. And Grandma is an active caregiver working with Elliott almost every day and providing the only relief allowing Gabi and John to get reliable support and some real breaks.

Basically, there’s no coverage for the skilled nursing care needed to provide any support for the around-the-clock specialized care Elliott requires. And beyond the need for skilled care, they desperately need an administrative aid to help stay on top of the continual flow of bills, claims, appointments, recordkeeping etc. That alone is close to a full time job!!

Then there’s the bizarre insurance rule that they don’t cover anything for safety – it has to be therapeutic. So the expensive adaptive car seat is not covered so until we can identify and obtain an appropriately adaptive car seat. Elliott continues to get around in an infant seat, which provides essential head and trunk support. Similarly, the specialized bath chair he needs is not covered by insurance.

Gabi and John are clearly doing an incredible job caring for Elliott and trying to make ends meet but the financial burden is impossible to maintain – even with all the support their families are providing. A number of family and friends have expressed an interest in supporting them – and while it is difficult for them to accept pure gifts – they have agreed to at least be open about what kinds of support is needed and how they could apply funds to improving Elliott’s care – and reducing their overpowering burden.

Following is a listing of the areas where donations would make a definite impact and really help them – and Elliott - out. We’ve outlined the diverse needs in list form and the total amounts required. Clearly we welcome any increment of support you wish to provide. Please don’t get intimidated by the huge amounts – clearly every donation – no matter how small – can contribute to relieving the burden and allowing some expenditures they couldn’t otherwise afford.