Help Ethan's parents pay his medical expenses

Imagine being a grandparent unable to help your grandchild who is struggling with a rare medical condition. Our grandson, Ethan Powers, was born 23 years ago with Velo Cardio Facial Syndrome (VCFS)-- also known as DiGeorge Syndrome or 22Q11–which causes both physical and intellectual challenges. The list of anomalies for the syndrome is very long. Ethan has a number of these, many of which have required major surgery–eight by the time he was 8 years old and the latest a year ago when 2 steel rods were installed on either side of his spinal column to straighten his curvature. Then in October Ethan had a seizure and fell, breaking both legs. Yep. Both femurs snapped just below his hip joints. During 5 hours of surgery, metal pieces were installed to hold the bones in place.

Following this surgery, Ethan spent 3 weeks at Maine Medical Center and then a week in a physical therapy center where he strengthened his muscles and learned how to navigate in a wheelchair because he is not allowed to put any weight at all on either leg.

As anyone who's spent any time in either of such facilities knows, hospital and rehab facilities are expensive, and insurance does not cover the entire bill. Before he could be released to go home, Adam and Nina had to have two motorized staircase seats installed to get Ethan to and from their garage to the main living area of their split-level house. Insurance doesn’t cover this necessary expense, for which there will also be a monthly rental charge.

Ethan’s father, our son Adam Powers, is self-employed and his mom, our daughter-in-law Nina D’Appolito, is a medical technician for a large ophthalmology practice. They managed to keep up with Ethan’s medical and rehab bills through the end of 2023, but now they are looking at many months of bills for the wheelchair and the electric lifts, co-pay bills for the physical therapy Ethan will need for a protracted period, and other—as yet unknown—medically related needs. We know a full body MRI to test for bone density is scheduled for later this month, but we are still unsure about what else he may need going forward.

Adding to their financial dilemma, the family’s yearly $7,000 insurance deductible kicked in on January 1, 2024. Nina had to take an extended leave from her medical technician position in order to help Ethan during his long recovery period.

Meanwhile, in order to pay his staff and vendors at Elsmere BBQ during the normal winter slump, Adam will go without a paycheck for the next 4 weeks. As you can imagine money is very tight and the bills are piling up quickly. They expect to be facing $15,000 in medical expenses in the next several months.

Despite all his challenges, Ethan has always greeted the world with a sunny, can-do attitude. He graduated from his local high school and got a part-time job at McDonalds, where he became an expert breakfast burrito maker. His dream job, however, is to work in a daycare center; he loves toddlers and he’s very good with them according to the provider with whom he did a work experience stint before graduating. Before the accident, he had been seeking a daycare center classroom aide position with the help of his case manager and was excited about the possibility of attaining this dream job; he hopes he’ll be able to be back in the daycare job hunt later this year.

While we could do nothing about Ethan being born with a rare genetic syndrome, today we can help his parents cover these significant expenses through this fundraising drive. Many friends and extended family members have expressed an interest in helping, and since they are now tapped out financially, Adam and Nina have approved this Go Fund Me request. I am really happy that I can do this for them. Your donations will help them pay Ethan’s upcoming medical-related bills. Anything you can contribute will be gratefully accepted. Many thanks for any help you can give. Please feel free to share with others who may be interested.

Gratefully,

Ethan’s grandparents,

Andrea Fowler and Edward Powers