Jaycie is an active, 12 year old girl; always bouncing on the trampoline and doing cartwheels…she undoubtedly was destined to be a natural athlete! So in the fall of 2016, when she first complained of having some back pain, her mom thought ‘well of course your back hurts...look at how you treat it.’ However, when she began to whimper in her sleep from pain, it was time to see a doctor. In December 2016, Children’s Hospital Orthopedic department diagnosed her with scoliosis; her spine had a moderate 40 degree curve. She was prescribed a back/trunk brace which was to be worn 23 hours per day and hopefully, no surgery would be necessary.
Seven months later, while attending her grandpa’s funeral in July 2017, several family members noticed a significant difference in Jaycie’s posture. Jaycie could feel her back had been curving more but she’d learned to hide it.
Her Mom made a follow up appointment. On September 6, 2017 the curve in her spine had progressed to an unbelievable 70 degrees! Now the secret was out; surgery was now imminent and her mom was on the hunt for how it could be fixed!
Countless hours of research and phone calls were made only to discover that the more severe the degree of the curve, the fewer treatment options there are available.
A trip was made to Shriners Hospital in Spokane for an evaluation/consultation and while there additional x-rays were taken and revealed her spine had moved an additional 7 degrees in only two weeks; her spine was now at a 77 degree curve! Her spine was bending at an unbelievable rate!
Several more doctor appointments with local surgeons followed, but at the pace she was progressing, it was determined an expert needed to be consulted.
After much, much more research her mom discovered there are very few specialty scoliosis centers on the west coast.
The top one is in San Diego California and so in Oct 2017 Jaycie and her mom traveled there. An X-ray was preformed and Jaycie’s curve was now an 84. Her curve was taking her to a dangerous state.
Scoliosis is generally not life threatening until 90 degrees at which point, the heart and lungs can become compromised. Jaycie was getting dangerously close.
The surgery is gut-wrenching for a little girl to go through, and extremely painful for a mommy to think about.
In her mom’s research, she discovered a new surgery called Tethering. It’s a much easier surgery on the body and because it uses cables and not rods. It allows the spine to have some flexibility after surgery. Only a handful of surgeons perform this surgery and only 1 on the west coast, in San Diego where that day at the visit it was determined Jaycie was not a candidate for the special surgery because of her high curve and because of how fast it was moving.
The doctor in San Diego ordered a brain scan and MRI looking for an underlying cause and thankfully did not find cancer or other disorders!
However, the surgery that was suggested was gruesome. Her curve required two openings from armpit to hip to fix one curve and some removal of the spine and then a turnover in surgery to be opened from neck to buttocks to put a rod down her spine. There had to be a better way.
In comes Doctor Lonner from New York City. He is truly an expert. He’s done 3000+ of these surgery and Jaycie’s 84 degrees curve didn’t intimidate him.
He called Jaycie’s Mom on the phone and reassured her that he do the tethering surgery that can fix her.
If you love a child who is twisted and bent, who you can see is deforming everyday, who complains of being stiff, who is at risk for damaging her lungss and heart and is so physically tired from the stress this is causing her little body and a doctor says he can fix her, and give her a normal life than nothing can stop you from getting that child to the doctor who can help her.
Nothing except money…
Insurance is very difficult and this surgery requires many expert doctors....Neurosurgeon, anesthesiologist, and thoracic surgeon, just to name a few and two of them require upfront payment. The procedure without insurance is $250,000. After securing a new policy we are hoping insurance takes care of everything but $45,000.
The procedure is out of state so travel costs and extended stays are needed and the daily stuff still needs to happen at home. Jaycie is number 5 in her family and her mom is a single parent. Her brothers will stay behind and still need all the monthly support.
There is a lot of moving pieces and everything cost money.
Her last X-ray was in Oct and the real possibility is that as of now Dec 2017 she is past 90 degrees and the risk to her health is very real and staring this family in the face everyday. She already has permanent rib damage as her spine is not just bending but twisting and her ribs are sticking out in her front. She literally changes everyday. The doctors say her bending is just beginning as they can tell the next year will be a huge growth spurt for her. The more she grows the more she deforms. It’s beyond frightening. Most mothers relish in their child’s growth, Jaycie’s Mom prays she doesn’t. One doctor told her mom Jaycie will be catastrophically compromised in 6 months if a surgery to stop this is not preformed.
Her surgery is set for Jan 17 2018 in New York. The proper funds need to be in place for this to happen and keep her on the schedule. Time is running out. We need help to ensure our precious Jaycie gets the help she needs.
Anything helps as we begin this new season.
Thanks for reading!!
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