Will B.

Will B.

We are so appreciative of what Miracle Travel Works does for kids with medical issues.

We live in Seattle, WA. Our son has Duchenne Muscular Dystrophy. He was diagnosed at age 3 years. The local neurologist ordered the wrong tests which caused us not to get a diagnosis until about 6-8 months later. It wasn’t until I spoke with a neurologist at Cincinnati Children’s Hospital, did we receive important information on which genetic test should be ordered. We made an appointment with this world class neurologist using a commercial airliner that offered free air fair for out of town medical appointments for sick children – but we had to wait for last minute flights, change planes many times. You can imagine how stressful it is to travel with a sick child under these circumstances. After that, we paid our own way which was over $1500 total for 3 people. One parent is not enough to navigate all the clinic appointments and taking care of our son for a week. Then consider that if you stay at a hotel, that is another $150 per night times 7 days = $1060 and that’s not including car rental, or food. It’s quite an expensive trip for our family. We managed since I have family in Kentucky where we stayed and they would fix us meals and loan us a car and that left us with air cost which again, is about $1500 round trip. That trip once a year costs our family about 3-4000 a year. It does not sound like alot but if only one parent is working, it is.

Many people ask us why we travel across the country to get care. DMD is a very deadly disease & the clinic in Cincinnati sees over 1000 kids. DMD is considered a rare disease 1 in every 3500 kids have it and b/c of the rare aspect, it is not well known & hence care is rare as well. Duchenne Muscular Dystrophy can be a spontaneous or genetic disease whereby the dystrophin gene has an error in it. This error stops the gene from producing the dystrophin protein that acts as an anchor for muscles. This causes the muscles to lose strength and break down. By 8-12 years, kids are in wheel chairs and it eventually takes their lives in late teens to 20’s. It is the #1 killer of children.

Our last trip – our son is now in a power wheel chair and our family’s house in Kentucky is not accessible. We were lucky enough to get into the Ronald McDonald House right across from the hospital for time the we were there. The airline cost was still substantial at $1500. I had heard about Miracle Travel Works from some other families. With Miracle Travel Works’s help – I was able to fill out on-line form and help receive reimbursement. That was such a blessing to our family. There are so many costs out of pocket for families with diseases. There are out of pocket deductibles, co pays, supplements that the insurance won’t pay for. Our company changed health care providers this year and some of his health care providers are not covered so this increased our coinsurance amount and deductibles as well. Our home had to be remodeled so it was accessible – a huge financial cost as well. An accessible vehicle had to be purchased as well another huge expense. Neither of those are covered by insurance.

I would like to thank everyone who contributes toward this wonderful non profit. Without it, it would be a huge financial strain on our family. People just don’t know how comforting it is to know the family does not have to by-pass the best care due to expenses. Thank you so much for all those who contribute toward this so important cause.

Sincerely,
Char, Dan and Will Burke

Skills

Posted on

August 12, 2017