Jayci's Scoliosis Correction

I want to tell you about this amazing kid I know, Jayci Lark Rhodes.

Jayci is 12 years old. Like most kids her age, she loves art, music, and spending time with her family and friends.

Unlike most kids, though, Jayci has 22q11.2 Deletion Syndrome, or DiGeorge Syndrome, caused by a missing portion of a chromosome.

Her parents, Brittany and Randy, received news of her diagnosis when Jayci was just 14 days old. Unfortunately, very little is known about 22q and research on the syndrome is vastly underfunded.

The symptoms can span hundreds of mild to severe ailments from congenital heart defects, feeding problems, skeletal anomalies, and many mental health, mood disorders and cognitive delays.

Jayci was in the NICU for 23 days and had to be fed through a nasogastric tube until she was 5 months old. During her short 12 years, she has struggled to overcome health issues such as mitral valve prolapse and regurgitation, submucosal cleft palate, scoliosis, severe anxiety stemming from medical procedures, learning delays, and chronic back pain. She has to wear a custom-made back brace every day and is in continual physical therapy to strengthen her muscles.

Jayci and her family have worked tirelessly to overcome all the challenges that come along with 22q. Over the last few years, they've been faced with the decision to have a complete surgical fusion performed on Jayci's thoracic spine in order to stave off any further distortion from scoliosis. Spinal fusion is a serious surgery for anyone, particularly a medically vulnerable 12-year-old. It would involve an extended stay in the ICU, considerable amounts of pain, intense physical therapy, and no guarantees that it will work as it should and carries all the usual risks of surgical procedures.

An alternate procedure has a much better chance of success for Jayci's needs; it's much less invasive and carries a much shorter recovery time. An anterior scoliosis correction could not only help her retain her current quality of life but would improve her quality of life significantly, and at a much lower risk of further injury or failure. Complete fusion carries a much higher risk of tearing of tissue and injury to the discs in the spine.

The problem is that time is running out for Jayci to be eligible for the anterior scoliosis correction. For the last few years, Brittany has researched every available option for her child, flown her across the country to attend scoliosis clinics, and spent hours and hours on the phone with doctors' offices, insurance companies, and hospitals. The anterior scoliosis correction is the best option for Jayci to have a life with less pain, more movement, and it allows for the possibility of future, successful procedures.

Brittany and Randy are responsible for $70,000 of the surgical cost, not including travel and living expenses for the out-of-state surgery and recovery. They have to pay $40,000 of that upfront just to schedule. Time is running out for Jayci to have this life-altering procedure because the correction is no longer possible once her spine grows to a certain point.

Brittany and Randy are great people with kind and loving hearts, and they have always been fully dedicated to making sure that Jayci has the best life possible. Any donations are greatly appreciated. For more information on 22q syndrome, visit https://22qfamilyfoundation.org/.