Help Fund Ella's Scoliosis Surgry : Change brings Hope!

From Setbacks to Success: How Challenges Became Blessings in Ella's Scoliosis Battle

The Goal seems to be a moving target...we have HOPE and it is what we need!

Ella has idiopathic scoliosis. Her journey looks like many of the other children who are unexplainably diagnosed with this condition.

Our story looked very different when we initially found ourselves in a position that required financial support.

Our end goal is the same. Ella needs surgery to support her determination to live a fulfilling life.

YOUR SUPPORT PROVIDES

Getting to where we are today has been treacherous.

However, we have found that sometimes the climb is worth it, and challenges are sometimes a blessing in disguise.

Hope brings a beautiful view.

Ella, now 13, tried many different preventative therapies; ultimately, we were advised in Jan 2024 that she would need surgery.

Fast-forward:

Many doctors mentioned spinal fusion. We did hours of research, knowing there had to be a surgery that would not limit her mobility. Eventually, I found Vertebral Body Tethering (VBT).

The most significant difference between Spinal Fusion and VBT is that spinal fusion is a steel rod. Although individuals have been getting spinal fusion since the 1960s, it is considered reliable but would be very restrictive given the length of Ella's curve. VBT is a series of screws where a tether or cord stabilizes the spine by connecting the screws. This allows for much more mobility. (Images below are for visual reference only.)

During our consultations with multiple doctors, we were advised that VBT would bring challenges in getting insurance approval. Most health insurance plans consider VBT an "experimental" surgery. So far, we have only seen denial letters.

Knowing the out-of-pocket cost of $198,000, we started our GoFundMe. The original campaign story can be seen HERE.

On July 31st, 2024, Ella's surgery was canceled during admissions. That morning was horrific; you can find the details HERE - Part ONE | Part TWO

Since recovering from the cancellation of her surgery, Dave and I have been back at work.

At first, we were trying to fight the insurance company. After learning more than I ever wanted to know about Self-Funded Insurance, the chance of coverage was slim to none. Our doctor at Mayo would only reschedule with approval from our self-funded insurance plan. Ella is out of time.

We continued to research available options, still not giving up, and did not accept spinal fusion as the answer. After more Google searches, Dave found another type of surgery, Anterior Scoliosis Correction (ASC).

Her VBT surgery cancellation led to our search for other options - Dave found ASC.

The canceled surgery is our blessing in disguise.

It is Ella’s chance to have an even more medically advanced surgery. The insurance coverage for ASC is unknown.

We are working with the new medical facility and a group of doctors to determine whether Ella is a good candidate. So far, so good; Ella’s next appointment is on September 3rd.

With hopes of some coverage for ASC, we have reduced the amount of the GoFundMe - the new amount will support out of pocket costs that are still out of reach. It only feels achievable because fo the support we have already received!! WE ARE ALMOST ½ WAY THERE!!

We are incredibly grateful to all the AMAZING individuals who have supported us emotionally and financially and shown David and I how much you care about our daughter, Ella. THANK YOU!!

We would appreciate you forwarding our story. With your support, we believe that there is HOPE❤️