Help support Elias’ medical bills

*** I know this is long but please take the time to read Elias’ story.

Hi! My our names are Angela and Eli. Our son Elias was born with congenital heart disease. He is currently 4.5 years old. We found out he had a heart defect when I was around 20 weeks pregnant. During pregnancy I had many long ultrasounds with his cardiologist. His defect is pretty complex, he was formally diagnosed shortly after birth, his diagnosis is called “Double outlet right ventricle with aortic-mitral discontinuity with a subaortic VSD and pulmonary stenosis” Elias was born at Nemours children’s hospital so that we would not be separated after birth since he would be taken to the cardiac intensive care unit to monitor him and gauge if he would need care immediately. When I gave birth I looked up and suddenly there was at least 20 people in the room. My doctors and then the cicu team and nicu team. We had about 30 minutes with our son before he was taken to the cicu and I didn’t see him again for the next 12 hours, I was able to visit him and briefly hold him. After all the testing/ekgs/ultrasounds, the doctors told us they may be able to hold off on open heart surgery for 3-6 months. We spent the next 6 days at the hospital with him and on that 6th day they told us our baby would need open heart surgery immediately the next day. Obviously for any parent this was scary for us, he was only a week old. Thankfully surgery went well and we spent the next 3 weeks recovering in the cardiac unit. That month was all a blur to me. We were told he’d need another surgery in about 3 years. We were home for 2 months and of course had many doctors appointments, at his 2 month follow up the doctor scheduled a cardiac catheterzation. During that procedure they called us in to tell us he would need his second open heart surgery immediately the next day. We spent Christmas Eve, Christmas and new years at Nemours. He was about 4 months at the time. He had regular appointments every couple months. Up until he was 1.5 years old. At his checkup they informed us he would again need another open heart surgery. That would make number 3 before he even turned 2 years old. I’m sure anyone with kids can imagine how scary this has been for us. Also this happened during Covid so not only were we young first time parents we were also pretty isolated from our families and witnessed our baby is some pretty rough conditions alone. We are forever grateful for the cardiac team at Nemours and every doctor and nurse we have encountered, they have always been so comforting and reassuring to us we couldn’t imagine his care being anywhere else.

During this period of time Elias was covered under medicad, since I applied during Covid (I was 16 weeks when lockdown started) I was automatically accepted and up until December 2023 they never sent any renewals, or asked for any update in income. Of course anyone in our position wouldn’t question it. Unfortunately I applied for medicad for my two kids (we also have a 3 year old daughter) and according to the state I “make too much to qualify”. I am grateful that I have a decent job that I can comfortably afford to support my family. We are not rich by any means but our kids are well taken care of. Insurance through my job that may not even accept his medical expenses was an additional $600 a month that I could just simply not afford. We have now applied for disability medicad 3 times and have been denied. We don’t understand how he does not qualify for this service as his treatment is medically necessary and his condition is forever. There are much less serious conditions that are not life or death that is covered by disability medicad. Nemours children’s hospital offers financial aid for patients that don’t have insurance and it is income based. Our split with them is 80/20. In just a year 20 percent has landed us a bill of 38k as of right now, with a pending bill (since we were waiting on a decision from the disability medicad for the 3rd time) that has not to my knowledge went through as of now. His most recent cardiac catheterization was a estimated 32k. That is the bulk of this bill. With recently being denied again, I have to renew my financial aid with Nemours. He has another catheterization scheduled for the end of this year.The doctors have let us know surgery could be in the near future as he hasn’t had one since he was 1.5 years old, he has artificial parts in his heart that he is out growing. We want our focus to be our son, not how we are going to pay for his care. We don’t want to worry about losing the cardiac team he has been with since before birth. I want to do this fund raiser so we can pay this bill and not worry about not being eligible for the financial aid again. Our plan is to appeal this denial again, work to get this as paid off as we can, and bite the bullet during open enrollment for health insurance and enroll in a plan so we don’t have as big of a bill pile up. I have fought with the hard decision of leaving my job or taking a lower position just so we can qualify for Medicaid, but I just know the effect that will have on our kids quality of life and I just don’t think it’s fair that everything is difficult for the “middle class” that work hard everyday to provide for their family.

Doing a gofundme was a tough decision for us, as we don’t ask anyone for anything. But I feel like at this point we have exhausted every option. Every penny will go to our son’s care and anything helps. Even just sharing this story. Even if we only raise a portion of our goal, literally anything will help.

We are proud and super grateful that our son is a happy, strong, smart little man despite all the challenges he faces. He is perfectly healthy in every other aspect.

Thank you for even taking the time to read our story.