Walking with Reagan (Support Reagan's SDR Journey)

*To read about Reagan's journey since she was born, continue down below the thank you section.*

Reagan is a 3 year old little girl who was born with Spastic Cerebral Palsy. This affects her movement and muscle control. Despite the challenges she faces everyday, Reagan is the happiest child. She has unbelievable determination and does not let anything stop her from doing almost everything her peers do.

Reagan has been given the opportunity to undergo a life-changing procedure called Selective Dorsal Rhizotomy (SDR) surgery on June 24, 2025. SDR is a highly specialized procedure that will target the nerves causing Reagan’s muscle stiffness and the increased tone, offering the potential for significant improvements in her mobility. Following surgery, Reagan will begin intensive in-patient rehab, followed by up to 2 years of intense physical therapy, to help her regain strength and improve her coordination. With the right support, Reagan has the opportunity to walk independently, reduce pain, and run and play like the other kids do.

Along with the costs associated with the surgery and the necessary post-operative care, Tyler and Kayla will be staying in Columbus with Reagan for 3 to 4 weeks while she is in the hospital and for the in-patient rehab. Your contributions will go directly toward funding the recovery, rehabilitation, and the expenses the Sabatula Family will incur traveling to Columbus for the month and maintaining her necessary rehabilitation once she is discharged.

Thank you so much for taking the time to read about Reagan's journey. Your kindness and support mean the world to Reagan and our family.

Reagan's Story

Reagan was born prematurely at 32 weeks. Weighing 4lbs 9oz, she spent 18 days in the neonatal intensive care unit. While in the NICU, a routine head ultrasound, done on all premature babies born before 36 weeks, we learned that she suffered bilateral grade 1 intraventricular hemorrhages that evolved into grade 2 intraventricular hemorrhages. Unfortunately for these types of brain bleeds, there is no specific treatment unless there are complications like hydrocephalus. The care plan was to monitor the bleeding and watch out for complications. Thankfully, the bleeding resolved on its own. Reagan continued to develop normally. Other than Tyler and I thinking that she was an extremely stiff baby, she had no other complications and hit all of her developmental milestones. Until she was around 9 months old. She still could not sit up on her bum without support and she showed no signs of getting ready to crawl. Her pediatrician recommended that we give her a few more months to catch up since she was born so premature and is expected to have delays in motor function. During her 1 year old check up in November 2022, we still saw no improvements. The pediatrician recommended we start physical therapy to address the developmental delay. We were not prepared for what we learned soon after starting physical therapy.

Physical therapy began in January 2023. A few weeks into our sessions, the PT asked if the doctor ever mentioned the possibility of Reagan having any permanent brain damage from the bleed she suffered when she was a baby. We were very confused. We were not aware that she could have suffered any permanent damage. We were only told that the bleed had resolved itself and it was nothing to worry about. He recommended we speak with a neurologist and an orthopedic doctor to discuss the possibility of Reagan having cerebral palsy. Cerebral palsy (CP) is a brain disorder that impacts a person’s ability to move and control their muscles. The more research we did, the more we agreed with the physical therapist.

In June 2023, Reagan had her first appointment with her orthopedic doctor. He diagnosed her with cerebral palsy and prescribed ankle-foot orthotics (AFOs). We also got scheduled with the Cerebral Palsy Clinic where they have all of her appointments in one day instead of spread out throughout the month. By October 2023, about a month after Reagan turned 2 years old, we had an official diagnosis of Spastic Diplegic Cerebral Palsy. A type of CP that primarily affects the legs, causing increased muscle tone (spasticity) and difficulty with movement in the lower limbs. There is also no cure for CP. You can only manage the symptoms as they arise.

Reagan has since had numerous doctors appointments, therapy sessions, scans, BOTOX injections, and medications to manage her symptoms and try to improve her quality of life. Unfortunately, all of these interventions have only temporarily reduced the spasticity and pain that she experiences 24/7. After a year of a combination of interventions, we still did not make any progress in reducing her pain and spasticity for more than a few weeks.

Crawling, being carried, and recently using a wheelchair are the only ways that Reagan can move around. She cannot sleep through the night without getting severe spasms and cramps in her calves that wake her up due to the pain. The spasticity is so severe that we cannot get her AFOs onto her feet for more than a minute without her feet coming out of them, she tells us she is in pain more than once a day, and she has developed hip dysplasia that has caused the socket where her femur meets her pelvis to become shallow and will need reconstructive surgery on her hips to correct.

At her most recent CP clinic appointment, we expressed our concerns with Reagan’s doctors. We had hit a wall with the treatment. Her muscle relaxer dosage increased 4 times in 10 months. The BOTOX injections, that previously reduced the spasticity significantly for a few months, only reduce the spasticity slightly and only lasts a month or two. Therapy sessions are almost impossible because of the pain and discomfort in her legs as well as the fatigue she gets from attempting to pull herself to stand up. We were defeated. We felt like we were doing everything that we could to help her, but nothing was helping. Then her neurologist gave us a recommendation that would completely change the course of our thinking.

This recommendation was a surgery done only on children that had spastic diplegic cerebral palsy. Selective Dorsal Rhizotomy (SDR), is a surgical procedure that reduces spasticity in children with CP. It is done by selectively cutting certain sensory nerves in the lower spine that contribute to the spasticity. So we started doing our research. Not only into the procedure, but also into surgeons that have experience and are qualified to do this complicated procedure. Our research told us that this procedure is only offered by a handful of pediatric hospitals in the country, and only a few surgeons are trained in the technique. At our neurologists recommendation, we reached out to a surgeon with decades of experience at Nationwide Children’s Hospital in Columbus, Ohio. After submitting Reagan’s medical records and an evaluation, we were told that Reagan meets the requirements to meet with the surgeon to discuss if she is a good candidate for surgery.

Two weeks later we met with the surgeon and physical therapist in Ohio. They determined that Reagan is a perfect candidate for this surgery and he is very confident he can permanently reduce her spasticity and possibly remove the spasticity completely. We talked about the questions we had. Some parts of the surgery itself as well as the physical therapy that would follow. We finished the appointment knowing that we wanted to move forward with the surgery. Dr. Leonard thought that having her on the schedule by summer would be perfect as long as we were okay with moving forward. We agreed and they told us they would contact us with a surgery date.

About a month later, on April 21, we received the call we had been waiting for. We decided on June 24, 2025.