My name is Kristy. I have started this GoFundMe in hopes we can take a wee bit of the financial burden off of a fellow RTS mom and dad, Janice and Bill, while they get their son Eli the help he so desperately needs.

Her son, Eli, has Rubinstein-Taybi Syndrome like my daughter does. He is a 14-year-old boy who has been struggling with his walking since 2021. His mom, Janice, has done everything possible to get him the help he needs and has been met with one hurdle after another. Our kiddos don't show their pain; they don't present like a "typical" person would on an MRI or X-ray, and the syndrome is so rare that the specialists just don't know how to treat them, leaving us to advocate for everything. Janice has taken Eli to 3 neurosurgeons and 3 orthopedists, and intense physio, all saying nothing is wrong. . Eli has endured many MRIs, X-rays, intense physio and even a foot surgery with no improvement in his walking. Tethered spinal cord is common in kids with RTS, but they don't show it well or typically on an MRI. Tethered spinal cord causes many issues when not corrected early. Chronic constipation, inability to control your bowels, leg and knee pain, back pain, nerve pain and eventually the need for a wheelchair. Often times the nerve damage is permanent and cannot be reversed, so time is of the essence for Eli.

After going to 3 different children's hospitals including St. Louis Children's, St. Louis Shriners, and Cardinal Glennon in St. Louis, Janice found a neurosurgeon who is taking her concerns seriously. The problem lies in that it is a plane ride away at Texas Children's Hospital in Houston, 929 miles away from their home in Robinson, Illinois. They will be paying out of pocket for all travel, housing, and food while there. Janice and her husband Bill have to take time off work.

Eli will be there for approximately 3 weeks from March 30 (Eli's 15th birthday) to April 26, to have sedated MRIs, urodynamic studies, appointments with physical medicine and rehab, pre-screening for surgery, and with all hopes, tethered cord surgery on April 10. He will need to stay close until his post-op appointment on April 22.

The cost of this is a lot for any family to bear on their own. Of course, there is no government assistance. They will need to take out a huge loan to make this happen for Eli. Janice and Bill will do anything to relieve the pain and get Eli walking straight and confidently once again! If you can help in any way, even just a couple of dollars for a coffee, it would mean the world to them.