The love of grandparents

A family establishes a consortium to study a rare disease

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Betsy and Sam Reeves are changing the future for their granddaughter.

BY Michele Hoeft

The love for a grandchild is unmatched in intensity. The hopes and dreams grandparents have for a grandchild are unconditional. Different emotions emerge when you are told that your granddaughter has been diagnosed with a disorder that will forever make her life more difficult. The desire to keep her healthy is unstoppable. After five years of tests, doctors, questions and concerns, these grandparents’ commitment to finding a treatment is unmatched.

Sam and Betsy Reeves’ young granddaughter was originally diagnosed with scoliosis. They knew it was crucial that they identify the best doctors, who in turn would bring the safest and best remedy. A correct diagnosis of syringomyelia Chiari I malformation was made by Lawrence G. Lenke, MD, the Jerome J. Gilden M.D. Professor of Orthopaedic Surgery at the School of Medicine.

With Lenke’s referral, the Reeves family took the young girl to internationally renowned pediatric neurosurgeon, T.S. Park, MD, the Shi Hui Huang Professor of Neurosurgery at Washington University School of Medicine and neurosurgeon-in-chief at St. Louis Children’s Hospital.  

Syringomyelia is a disorder that affects children and young adults that when left untreated can lead to severe, chronic pain and progressive muscle weakness. Sam and Betsy learned that the condition is so infrequently encountered that there are no evidence-based guidelines to help determine the best treatment.

The Reeves saw the immediate need to work with Park and his colleagues at Washington University and St. Louis Children’s Hospital in an effort to halt or reverse their granddaughter’s condition. They subsequently decided to partner with Park and establish the Park/Reeves Syringomyelia Research Consortium.  

Sam shares, “Our granddaughter didn’t show typical syringomyelia symptoms so she was misdiagnosed four times by outstanding facilities/orthopedic surgeons as having scoliosis before our visit to Dr. Lenke at Washington University. We also discovered that proper treatment of syringomyelia can also be elusive . . . It is more of an art than a science. The key is having access to and dialogue with great medical practitioners such as Dr. T.S. Park. With this in mind and after countless hours of research, visits and networking, it is our hope that the Park/Reeves Syringomyelia Research Consortium will be a collaborative research center that can gather large-sample-size information about syringomyelia patients from hospitals across America.”

The information collected will be used tocreate a national syringomyelia registry that will facilitate the diagnoses, treatments and outcomes for current and future patients.

Park assembled a team of exceptional physicians and scientists at Washington University including Lenke, David D. Limbrick Jr., MD, PhD, Ralph G. Dacey Jr., MD, and Robert C. McKinstry III, MD, PhD. The consortium, headed by Park and Limbrick, includes more than 30 pediatric neurosurgery centers from across the United States.

According to Park, the private donation for creation of a national registry for the study of any neurological disorder is unprecedented. The overarching goal is to establish guidelines for the best practices for treatment of syringomyelia in children. The data generated from the consortium will benefit not only the Reeves’ granddaughter, but other children as well.

Thanks to Park and other medical colleagues, the Reeves’ granddaughter is courageously reinventing herself. Before, she was a Division I soccer player and cross country runner. Now, she is actively pursuing some old and new passions. Currently, she is an environmental enthusiast, photographer, reader, Harry Potter club organizer, and butterfly gardener.

The Reeves’ gift to Washington University has forever changed the future of syringomyelia research. Without the private philanthropy of gracious donors like the Reeves, the large-scale research of syringomyelia would not be possible.

The unwavering love of grandparents is truly unmatched in intensity. And, in the process, faith and hope abounds for others.


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