Heal Ella’s Heart - Fundraiser for Urgent Surgery

Ella Wannamaker, my sweet niece urgently needs heart surgery due to a congenital heart disease. This stent surgery was unexpected, the cost is astronomical, we need your help!

Ella's first heart surgery

Ella's first day of school this year

Here's the short story:

Hello! I am Sara DeRose, Ella's aunt, and like many of you, I have read, cried at and contributed at things like this for years, never thinking I’d need to start one.

Ella was born with Congenital Heart Disease (CHD) that went undiagnosed for five years. After an initial surgery to place a stent at age five, Ella has outgrown her stent two years earlier than expected and has become dangerously hypertensive. She needs urgent surgery to place a larger stent and restore blood flow. Due to her hypertension levels, they advised it to be no later than December, possibly earlier if her hypertension rises above its current level.

Ella’s surgery is estimated at $70K, and her family does not have the funds or means to cover this cost. This surgery is double the cost of her first surgery due to rising costs. Ella’s family has had to drain their savings due to financial challenges in 2022. They are self-employed, running a non-profit that has met the challenge of staying afloat during Covid. They cannot afford private health insurance, leaving them to self-pay and seek health aid in various ways. In addition, between an unexpected move and rising costs in caring for a family of six, they cannot come up with the up-front surgery cost or continuing costs of the surgery.

We have TWO goals:

1. Raise the $15K needed by December to get Ella's surgery without delay

2. Raise $55K to pay off the surgery and follow-up treatment over the following months.

Any money that is raised beyond the $70K needed will go to pay for ongoing health care costs related for Ella.

The Longer Version:

Benjamin, Ella, Tucker, Addie, Julie & Thomas Wannamaker

Ella's Story

Our Ella-bean is the youngest of my brother Tucker and sister-in-law Julie’s four children. She is a 10-year-old bubbly girl who dreams of being an Olympic gymnast (just ask her to show you her moves). When she’s not at gymnastics, she can be found helping with projects around the house, listening to music and riding her bike.

Helping out dad, her favorite

Ella has always been small for her size (maybe that’s why she’s always been Ella-bean!). Her well-checks were always good; she was bubbly, healthy and energetic (an understatement), so we never were concerned. Ella started exhibiting some concerning symptoms in late 2018/2019. Through a series of appointments and tests, we found that Ella was born with Congenital Heart Disease (CHD), which went uncaught and undiagnosed for her first five years. The Chief of Cardiology told us that if her CHD had not been caught when it was, she likely would have had a heart attack.

Going in for her first surgery

Diagnosis

Ella has a few different congenital heart issues. She has a Coarctation of the Aorta, a constriction of her aorta that was so pronounced by the time she was diagnosed (see the x-ray photos below) that a pulse could not be found in her feet and was the primary contributor to her slow growth. She also has aortic valve stenosis (hers is a bicuspid aortic valve), and a condition where some of the vessels & arteries coming out of her heart are enlarged, cramping areas in her throat that generally would not be cramped.

X-rays from before/after first surgery

Treatment

Ella underwent her first surgery to insert a stent into her aorta to open the coarctation enough to help her get adequate blood flow throughout her body in Christmas 2019. However, due to her size, the surgeon's only option was to insert the smallest size stent available, meant for livers. Ella’s cardiologist hoped this small liver stent would hold and provide ample blood flow for Ella until she was 12 years old. She would then have another surgery to expand the same stent in preparation for the significant growth spurt during puberty.

Walking into her first surgery like a star

Ella has regular check-ups with specialists for her condition. In August, we found that Ella's stent no longer provides the support needed, causing hypertension in her upper body. Her hypertension has risen to a level that she needs this surgery two years earlier than expected to avoid a hypertensive crisis, open blood flow and install a larger and more robust stent.

This new stent should be able to provide Ella with many years of support, much more than the four years this current stent offered, and allow more time between her following surgeries. She will need another heart stent surgery before age 18 to open the stent to a full/adult size for the coarctation and a full open-heart surgery as a young adult to deal with her other heart condition, her bicuspid valve.

More on the Financial Burden

Like many, the last few years through Covid and post-Covid have been challenging financially, including Tucker and Julie. 2022 has been a particularly challenging. Already recovering from the covid effects on their life and non-profit business, the inflation of prices for food and gas for a family of six, plus an unexpected move this summer on top of that meant Ella's family had to drain their savings and borrow from family to meet those unexpected challenges and begin to rebuild their savings. Hearing the news that Ella needs another expensive heart surgery years sooner than expected has sent them absolutely scrambling.

Traditional private health insurance continues to be far too expensive for non-profit and small businesses, so like many of us, they've had to get creative with covering health costs outside of private insurance. The costs are still high for self-pay individuals, even with the coverage provided by health aid programs, participating in medical cost-sharing nonprofits, health savings accounts, and self-paying to get discounts from with providers.

Health Cost Breakdown

With rising medical costs, this surgery is nearly double the cost of her first surgery. While her first surgery cost $40K, the quoted price for this surgery is $70,000, which is after a 30% self-pay discount.

That price does not include any initial doctor visits/scans (which run $500 - $2K each) and is a “best case scenario" with an overnight stay and early release, meaning the bill is often higher.

How Will the Funds Be Used?

Tucker and Julie will use the funds to pay the up-front pre-op and surgery costs, additional hospital bills and follow-up visits.

The first $15K needed immediately covers all pre-op visits leading up to the surgery, including scans/tests, paying all providers and hospital for the downpayment of the surgery and any medical necessities required (e.g. prescriptions, etc.) The remaining funds cover paying off the surgery in the months to follow, post-op visits and tests, and necessities required for recovery (e.g. prescriptions, required therapies.)

Meanwhile, they continue to seek ways they can cover their costs through also applying for medical grants and participating in a non-profit cost-sharing program.

Right now, they don't have the up-front cost that is required, and it remains unknown what aid will come through and what/if any portion will be covered when/if it does, as many aid/cost-sharing reimbursements don’t start until several months after treatment.

Medical burdens like this can have rippling effects beyond threatening Ella‘s life, but can also devastate the entire family and their business. We don't want that to happen.

Ella & mom enjoying summer

We will continue to post regular updates about Ella, her appointments, surgery and progress, and honestly share the bills and payments as we go. Thank you!