Innovating to Empower Families
A donor-funded virtual reality treadmill helps patients learn to stand and walk again
Children with Prader-Willi syndrome, a complex condition with symptoms that include poor muscle tone, developmental delays and a constant sense of hunger, often require an extensive team of doctors and specialists. As a Cook Children's Endowed Chair, Sani Roy, M.D., is building a program designed to provide more comprehensive care for these patients and establish our Cook Children's Medical Center as a Center of Excellence in the management of this unique condition.
As an endocrinologist, Dr. Roy has a long-standing interest in issues surrounding childhood growth and obesity. In 2016, she met a very special patient who inspired her to create change in the treatment of Prader-Willi syndrome.
"Soon after I joined Cook Children's, I met Diego, a young man with Prader-Willi syndrome," Dr. Roy said. "I was immediately drawn to this family because of the hardship they were facing [with access to care]. Diego had 10 specialists and at least three other therapists. I realized as I cared for him that we weren't doing this family an adequate service with this fragmented care. That's where the journey began."
Funds allocated to Dr. Roy by the endowed chair program are allowing her to develop the Prader-Willi Center, a complex and integrated program that gathers a team of doctors and specialists together to care for their patients.
"Every organ system is affected for these children," Dr. Roy said. "The goal is to provide more coordinated, comprehensive care. We want to improve education, help our doctors develop expertise, and awareness within our local and national communities. There are drugs that need to be developed, and through this endowed chair, we are hoping to play a role in advancing the science in this area."
"I like to call the program by an acronym – MPoWER. That's because it's a multidisciplinary Prader-Willi center that includes focuses on wellness, education and research," stated Dr. Roy. The program empowers families by providing them more access to resources and support. The clinic offers doctors and specialists in endocrinology, sleep medicine, rehabilitation, developmental pediatrics, behavioral health, nutrition and orthotics. The clinic also includes a nurse coordinator and social worker to help families navigate care and find the help they need.
Because Prader-Willi syndrome is a complex and rare condition, many families feel overwhelmed by the amount of care required for their child. Dr. Roy and her team encourage them to play an active role in their child's care.
"When we meet these families, the biggest thing we try to do is provide support and reassurance that our team is going to be with them every step of the way," Dr. Roy said. "We connect them with the necessary specialists and reassure them that with intervention and early referrals, a lot of the complications that they read about can potentially be prevented. We remind them that children with Prader-Willi syndrome are beautiful and have great personalities like any other child would."
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