A big decision: 'Though she be but little she is fierce'

In a world where young athletes constantly push their limits, our 13-year-old Ella stands out as a shining example of determination and passion for soccer. Many deal with challenges - Ella is no exception.

As loving parents, sharing her story is essential. This is for her and all the athletes who would benefit from Vertebral Body Tethering (VBT). There are many choices in life for all of us; however, Ella, diagnosed at 9 and now 13, has a short window of time to qualify for a relatively new surgery for her condition. She chooses mobility and a quick recovery time to return to the soccer pitch. VBT is the best option for her future, including her mental health and well-being, and getting her back to doing what she loves most - soccer. It was a shock to find out that without insurance approval, we are out of pocket $198,000.00
 

As we navigate this challenging time, we seek your support to help cover the medical expenses and ensure the best possible outcome for her. Here's how you can make a HUGE difference right away...

Scoliosis - she has all the physical symptoms listed below, and to top it off, although not frequently considered, the biggest challenge - restricted breathing - Yet she still plays soccer!

• Uneven shoulders.

• One shoulder blade appears more prominent than the other.

• Uneven waist.

• One hip is higher than the other.

• One side of the rib cage jutting forward.

• A prominence on one side of the back when bending forward.

• Her spine rotates and twists in addition to curving side to side, causing the ribs or muscles (her rib hump) on one side of the body to stick out farther than those on the other side.

Although she has endured countless doctor appointments, chiropractor visits, 2 back braces, Shroth Therapy and the Clear program (including giving up an entire spring break to go 8 hours a day), her pediatric orthopedic specialist at Children’s Mercy Hospital has said there is nothing else we can do.
 

It is always about the pros and cons, right?
 

Traditional Fusion surgery

• Metal rod careening down her entire spine

• A scar from her neck to her waist

• A week in the hospital

• Unknown - time out of school

• 6-month recovery timeline.

Vertebral Body Tethering (VBT)

• 8 small incisions (4 on each side - she will have to have a tether on the top and bottom curve) on her torso,

• A tether (think rubber band) connected to a screws in her vertebra

• 3-4 days at the hospital

• 1-2 weeks out of school

• 6-week recovery timeline

VBT is a surgery pioneered for about 10 years. Considering a literal steel rod down her back, VBT is a much less restrictive alternative to fusion surgery. Any support we receive will allow Ella to continue playing club soccer and participate in the Kansas Olympic Development Program (ODP).

The cost of the VBT surgery is substantial, with a price tag of $198,000. Unfortunately, our insurance has not approved her procedure due to its classification as a newer, less established surgery. With the surgery scheduled for July 31st, we have waited to reach out, but at this point, we are in a race against time to secure the necessary funds to cover the cost of the procedure. Regardless of coverage - we have significant out-of-pocket expenses - Your support allows her to get the surgery - and not miss the qualification window (she is a growing girl)...

What do I mean by “qualification window”
Her surgery was scheduled for July 31st, 2024. The surgery has restrictions around her growth progression, curve degrees (top curve at ~55 and bottom at ~47), and age. We don't have time to wait - it won't be long until she doesn't qualify. Although we have gone to the ends of the earth to communicate and advocate for her with the Mayo Clinic, the insurance company, and pretty much anyone who would listen, our time for insurance approval is running out.
Working to get approval has allowed me to meet some amazing people who continue to advocate for the coverage we need!! They are probably sick of hearing from me - and, like many of you - know me and recognize my positive yet determined and resilient voice :0)
Unfortunately, our July 31st surgery was canceled.  We are still fighting insurance to get it approved, as imaging has shown she is at the top of the curve, and time is of the essence 

Ella's commitment to her sport is unwavering, with her dedication and passion for soccer shining through in every game and practice. Despite the pain caused by her spinal condition, Ella rarely missed a practice or game, demonstrating her resilience and strength of character. In her last soccer game this season, she came off the field, and we left for Children's Mercy after her dad was unable to massage out the pain.

She is a fantastic teenager (time flies) with her compassion, empathy, intelligence, resilience, willingness to sacrifice for others, creativity, and beautiful voice acknowledged in school, team sports, and just hanging out with friends and other parents. Parents of other ladies she hangs out with have said she is always a pleasure. One parent said, "What can she not do?"