Louisville family fights the good fight for their six-year-old son who suffers from a rare genetic disorder
By Rachel Porter
Photos courtesy of the Vice family
Louisville mother Helen Vice gave her son and daughter a bath almost every night. It was a time for the kids to wind down from the day and play together while she quietly watched her babies grow up. She never anticipated one of these nights would change her family’s life forever. On an evening during their bedtime routine, Helen noticed something that looked abnormal on her 2-year-old son Robert’s spine while sitting in the tub. It was a small bump. Helen became concerned and knew something was not okay. “I googled it, and of course, you see the worst scenarios. It was a couple of weeks of obsessing over it until we took him to the pediatrician for peace of mind,” said Helen. “When we first walked into Dr. Jones’s office at East Louisville Pediatrics, he noticed something was not right with Robert’s head proportion to his body. When coupled with the curve in his back, we were sent to get an X-ray and then blood work immediately.”
In 2018, Robert was diagnosed with Morquio A Syndrome, a degenerative disease that affects approximately one in 200,000 to 300,000 children. With this disease, the body cannot produce enough enzymes to break down mucopolysaccharides, chains of sugar molecules used to build connective tissues. It creates dysostosis multiplexes when they don’t dissolve, leading to severe problems with bones, joints and other organs. Multiple health defects will worsen as time goes on, including shortened life expectancy with little to no growth. “Robert has grown less than six inches in three years, and he may not grow much more,” said Bobby Vice, Robert’s father.
With enzyme replacement therapy, the symptoms can be managed but not cured. Enzymes only last 24 hours in the body and often are destroyed 90% of the time by antibodies. Robert completes his four to six-hour infusion treatment that reduces sugar build-up once a week from home with a nurse. The Vice family often travels to Nemours Children’s Hospital in Delaware, a medical center known for its world-renowned experts. They have the experience to diagnose and treat Morquio Syndrome. So far, Robert has had three surgeries, with a fourth on the horizon. The three surgeries included the surgically placed port in his chest for weekly infusions, ear surgery and spinal surgery to fuse vertebrae C-1 to C-4. This kept Robert from further damaging his spinal cord that most likely would have led to paralysis. His upcoming surgery at Nemours Children’s Hospital is reconstructing his hips, knees and ankles to avoid a wheelchair.
No matter how many surgeries and treatments Robert has to experience, it still does not change who he is as a person. He is a typical six-year-old that attends school, hangs out with his sister Anna and loves to talk to other people. “Robert is the mayor of the pool! Even the Kindergarten teacher said he was the mayor of the school. He has a smaller body with a big personality,” said Helen and Bobby. Although he may not grow much taller or stronger and wears hearing aids that he calls his superpower ears, Robert always pushes beyond things that might be challenging for him. “We want to protect him, but also not mislead him and make sure he understands what his challenges are,” said Bobby. “We want him to know he can do whatever he wants in life.”
With the Vice’s eagerness to fight, they are determined to make sure Robert can do whatever he dreams of doing. Over the past three years, they knew they had to take action to support families affected by Morquio Syndrome everywhere. Their current goal is to raise one million dollars to connect with scientists and doctors to help them unfold new treatments and explore clinical trials that can potentially transform people’s lives. “We formed the nonprofit ‘A Cure for Robert, Inc.’ last year. We wanted to understand the market and how do you get things moving,” said Bobby. In September, the nonprofit held its first fundraising event at the Gheens Foundation Lodge located out of Floyds Fork. Two hundred thirty people attended and raised around $450,000 at the event. Then another $70,000 was raised afterward. “It is a testament to Louisville and to Robert to raise that amount of money and to how Robert has touched so many lives,” exclaimed Bobby. With this current and future financial support, the Vice family can find more answers for not only their son’s sake but so many other families around the world. The next steps for A Cure for Robert, Inc. are to provide additional funds for world-leading scientists that will accelerate and further advance Morquio treatment research currently underway and to attract new researchers to finding a cure for Morquio. Most importantly, they will continue to be Rooting for Robert with the community of Louisville by their side.
To donate and learn more about what you can do for Robert and others who suffer from Morquio Syndrome, please visit rootingforrobert.org.