Big Challenges for a Little Girl
After many visits to specialists and countless tests, London was finally diagnosed with a condition called Chiari Malformation with Syringomyelia at age 8. What this means is that the bottom portion of her brain was being forced out of the base of her skull and into her spinal column. This created a blockage of her cerebrospinal fluid, producing a long cyst in the middle of her spinal cord. The cyst impacted her spine, causing severe scoliosis. However, at this point the scoliosis took a back seat to the Chiari because Chiari can result in irreversible paralysis.
In December of 2017, London had brain surgery to help correct the Chiari. The hope was that the cyst would resolve on its own after surgery and her spine would shift back into place at least a little. While the surgery worked very well to reduce her symptoms from Chiari and the cyst, her scoliosis has unfortunately progressed. She’s 10 now, and her symptoms are only getting worse. Though London has already braved through her brain surgery and continues to try to do the things that other 10-year-olds do, being in pain every single day is taking its toll, impacting her activities and her spirit.
A devoted mom, Allie has thrown herself into finding a solution for London’s health issues so that she can regain her childhood and live a productive, happy life. Typically, spinal fusion is the answer for someone like London. This involves metal rods and screws, and would reduce London’s flexibility and movement for the rest of her life. But Allie was able to connect with a local surgeon who determined that London was a candidate for a newer type of surgery called VBT [Vertebral Body Tethering] that doesn’t involve fusion. The most common candidate is a growing adolescent (age 10 and older) in whom further growth can be taken advantage of to get more correction of the curvature over time. VBT surgery would correct her spine and reduce her pain while not putting any sort of limits on her physical activity for the future. The surgeon emphasized that for London to proceed with VBT surgery, it would need to be soon while she still has a lot of growth left.
London’s surgeon recommended that Allie contact Dr. Newton in San Diego, CA, who was one of the first surgeons to perform this type of surgery. After consulting with Dr. Newton, lots and lots of prayer, an insane amount of research, and several conversations with London, Allie and London decided that the VBT surgery would provide London with the best chance for a strong and healthy spine. Happily, London’s surgery is scheduled for September 11, 2019 in San Diego. London feels nervous but also very excited, saying she just wishes her surgery day would come sooner.
While a large portion of the medical expenses will be covered by insurance, Allie and London will have to travel to and from San Diego, and will need to stay there for 19 days. Although London will be in the hospital for 4-5 days following her surgery, the remainder of the time she will spend being cared for by her Mom until she is allowed to fly home to Florida. Since they have no family or friends in San Diego, Allie is estimating that housing, food, travel and medical expenses not covered by insurance (e.g. deductibles) will come to approximately $18,000. Allie will be unable to work for at least a month, so she’s understandably a little bit nervous about making ends meet while they are in California. Additionally, uncovered medical fees may increase about a month before surgery when Allie receives more information from the insurance company and the hospital.
Allie works super hard to provide for her girls, and has done an amazing job of handling London’s challenges up to this point, but she needs help to take this next (and hopefully last) step toward providing London with a life where she can thrive. As her friend, I want to do as much as I can to support her and her sweet daughter.
How You Can Help
Please donate and/or share this GO FUND ME link on your social media! Pray for London, Allie, and their family, and send lots of good vibes! We will be sure to share updates here as the time for London’s surgery comes closer and once it has happened. London has expressed that she hopes that one day her experiences through these surgeries and other parts of her life will help her to help other kids who might be going through something difficult. Your generosity will truly mean the world to this little girl, her family, and beyond. I thank you in advance!
- Michael Pierce
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