Five years ago, we were a normal family of 4. Today we are a family of six, raising 3 medically complex kids who have an undiagnosed progressive neuromuscular disease. In 2016 we had Dominic and before we fully understood his medical picture I was pregnant with DJ and we knew right away he had additional medical needs. When he was about 6 months old we had the suspicion that Vinny also had whatever was happening to his younger brothers...here we are today navigating family life with three boys who have varying degrees of a disease we don't even have a name for.
We have learned how to use cough assist machines and suction machines, how to hook up oxygen, how to give tube feedings, breathing treatments, and emergency medications. We speak medical jargon as well as most of their doctors and jump through insurance hoops like it's a hobby. Our free time consists of therapy schedules, iep meetings, follow up calls, and picking up medication. We've learned how to fight for services and equipment and equitable education for all of the boys.
The last year has shown us that it's equally important to fight for physicians that will fight for our kids and because of this we have had to transfer their medical care to out of state hospitals who are familiar with the nuances of rare disease.
Raising multiple children with a progressive disease is expensive. The older and bigger they get, the faster this disease moves, the more equipment they require. As much as we would like it to, insurance doesn't cover all of their equipment or services and we are at the point where they cannot go without these things.
We can also no longer afford to settle for doctors who make excuses and dismsis our concerns. Traveling out of state once a month with a family as big as ours for medical care that is necessary is really quite a burden financially.
But we refuse to stop fighting for our boys. Will you help us in some of that fight?
