.png)
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.
It is crucial for us as loving parents to share her story, not only for her benefit but also for all the athletes, artists, vocalists, students and any child that does not want the restrictions of a solid rod in their spine. These kids diagnosed with idiopathic scoliosis can opt for Vertebral Body Tethering (VBT).
We all have numerous options in life, but Ella, who was diagnosed with idiopathic scoliosis at the age of 9 and is now 13, has a limited timeframe to be medically eligible for a surgical procedure tailored to her condition, however, new in comparison to the standard, Spinal Fusion.
She opts for mobility and a speedy recovery to get back on the soccer field.
VBT is the optimal choice for her future, encompassing her mental health and well-being, and enabling her to return to her greatest passion - soccer. It's not just about soccer for Ella. She frequently sings, but lately, it has been difficult to get thru a chorus without losing her breath. Same goes for endurance while playing soccer or any activity for that matter. Being creative and art is a significant part of her life. Recently, even brief periods of bending over have been causing her discomfort. Towards the end of last year, she was absent from school frequently due to migraines, though there is limited research on this, it does appear plausible.
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...
Your positive thoughts can be Ella's tailwind of support for a fast recovery
Sharing is Caring - Please Like, Comment, Share
Your small change can make a big difference
Travel Points : Air / Hotel
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, Schroth Method 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, her curve is to large and she will need surgery.
Any support we receive will allow Ella to continue playing club soccer and participate in the Kansas Olympic Development Program (ODP), be painless and able to focus at school, sing loud and continue to create incredible art pieces-without pain!!
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 that has been pioneered over the last ~15 years and FDA Approved in 2019 is one of many alternate solutions for scoliosis treatments. Considering a literal steel rod down her back, VBT is a much less restrictive alternative to fusion surgery.
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 is 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)
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?"
Your donations will support her continued love of soccer and help her reach her ultimate goal of playing in college and then with KC Current at the 1st Women's Professional Soccer League Stadium in the WORLD
If you prefer to support Ella via direct ACH the account details are
Kelly Carlson
American Express HY Savings Account
Account number 320036683834
Routing Number 124085066
Comments