A project at Cook Children’s that helps kids with neurological conditions holds special meaning for Jewel Charity president Kathy Sneed
Jewel Charity has been raising funds for the health and well-being of the patients at Cook Children’s for the past 70 years. This year’s Signature Project is all about improving the lives and care for children with neurological conditions—an initiative near and dear to Jewel Charity president Kathy Sneed’s heart.
The fundraising efforts will benefit the Jane and John Justin Institute for Mind Health. Cook Children’s held a ribbon-cutting ceremony on October 19, to open the doors of the new facility.
Kids with neurological conditions often face many challenges – which often means multiple specialist visits across multiple locations. The Jane and John Justin Institute for Mind Health will change all of that by providing care that is centered around the unique needs of patients and families.
“The Jane and John Justin Institute for Mind Health at Cook Children’s School will bring together the disciplines of psychiatry, psychology, neurosurgery and neurology to be able to treat patients with a neurologic condition, and so I think being able to have all of those disciplines under one roof will support the patient being treated in that environment,” explained Kristen Pyrc, M.D., Co-Medical Director of Psychiatry.
Her first child, Matthew, was born in 1975 with mitral valve insufficiency, a disorder in which the valve between the left heart chambers doesn’t close completely. During his first 12 years, Matthew spent a lot of time at what was then Fort Worth Children’s Hospital.
When Matthew was 12, he underwent a fairly new procedure that fixed his condition. His improved health allowed him to play baseball and football for the first time in his life. Unfortunately, Kathy lost Matthew in a car accident when he was just 29 years old.
In 1979, Kathy had her second child, a baby girl who was born premature. At the time, medical care wasn’t as advanced as it is now, so she lived for just over one day.
Kathy adopted her third child, Kirk, in 1978 when he was 15 months old. When Kirk was 2, he suffered a stroke, which occurs when the supply of blood in the brain becomes blocked by a clogged or burst artery. Kirk’s stroke damaged his occipital nerve, which caused him to lose his sight entirely. Kirk spent 10 days at Fort Worth Children’s Hospital while medical staff tried to help Kathy understand what had happened and how she could help her son, who had become fully blind.
About a year and a half after Kirk’s stroke, a friend of Kathy’s who was volunteering in her church nursery shared with her an incredible observation. He told her that, earlier that day, Kirk had stopped himself before he ran into a fence. Because pediatric stroke patients are young and resilient, they will often regain a portion of the function they lost within a year or two. This was true for Kirk, who regained some of his sight, but is still considered visually impaired.
For Kathy and Kirk, supporting Jewel Charity’s mission to provide for the patients at
Cook Children’s is their way of creating the best patient experience available for families like theirs. Their story is the inspiration behind Kathy’s choice to designate the Pediatric Stroke and Thrombosis program for this year’s Signature Project.
“They have so many things now that we didn’t have,” said Kathy. “Kirk and I decided if we can do something to make sure this continues, to make sure that no family has to go through what we went through, we should do it.”
About the Institute
When looking for areas of improvement to continue providing the best possible care to children and their families, Cook Children’s noticed a lot of overlap between patients and saw a clear opportunity to improve not only the patient experience, but their overall outcome, by working together.
“Currently at the Child Study Center, while we are part of Cook Children’s, we’re in a completely separate building not near the main medical center, so the physicians and the psychologists and providers who work at the Child Study Center, it makes it just a lot more difficult to collaborate with the other specialities that our patients see,” said M. Zelime Elibol, M.D., Medical Director for the Child Study Center.
The institute will now bring together nine specialties under one roof for the first time, including:
- Developmental Pediatrics
- Developmental Psychology
- Pain Management
- Physical Medicine and Rehabilitation
“When you think about an institute of this nature, not only will this impact our patients today but I think for future generations to come. This will truly be a model for many of our other clinical disciplines to follow in the future,” Harris added. “This isn’t just a new gift by the Justin Foundation, this years in the making, this is a partnership that they believe in, that we believe in, and they truly have been at the forefront of pushing us not only clinically, but also pushing us philanthropically to make something of this nature happen.”