Carson's Fourth Annual Tournament for a Cure set for this weekend
Aug 28, 2023
Members of Team Carson pose for a picture during the 2021 tournament.
Jacqualin and Jacob Rhodes (left) organized a softball tournament to fundraise money to research a rare, genetic disorder their son Carson Rhodes (right) was diagnosed with as an infant. Carson's Fourth Annual Tournament for a Cure will be held this weekend.
BRATTLEBORO — As an infant, Carson Rhodes was diagnosed non-ketotic hyperglycinemia, a rare, genetic, metabolic disorder. Shortly after being diagnosed, his parents, Jacqualin and Jacob, started an annual softball tournament to help raise funds to find a cure.
This weekend, Carson’s Fourth Annual Tournament for a Cure will be held at the upper field of Living Memorial Park and "Brownie" Towle Brattleboro Area Softball Association Field on Route 30 on both Saturday and Sunday, Aug. 26-27.
Eric Carter, who has NKH and has played in the tournament for Team Carson, holds Carson Rhodes at a previous tournament.
Non-ketotic hyperglycinemia (NKH), also known as glycine encephalopathy, is a terminal condition, and most children born with it usually die within weeks of birth or suffer from severe developmental delays. The disease causes a buildup of glycine, an amino acid, in the tissues and fluid, especially the cerebral fluid, of the body. When Carson was still an infant, he was having seizures. His parents brought him to Baystate Medical in Springfield, Mass., where Carson received an MRI. He was then referred to Boston Children's Hospital where they received the diagnosis, according to previous reports.
While the form Carson, who is now 5 years old, has is less severe than some of the 500 other individuals living with the disease — it is still fatal. One hope for finding a cure for all people afflicted with the disease is through gene therapy. Research for a cure using gene therapy is being conducted at the Center for Rare & Neglected Diseases at the University of Notre Dame and University of Colorado School of Medicine.
While it is somewhat vague as to when trials would begin, Rhodes said she has been told that it would become available to them within the coming year.
“There has been an NKH patient registry in the U.S. opened so that we can make it easier for clinical trials that may be happening in the next year. We’re that close,” said Rhodes. “Next year, if it’s happening then, he would be eligible to do that. It’s exciting and terrifying at the same time.”
Children who are 6-years-old and above would be eligible to participate in the trials. Carson will turn six in March of 2024 and Jacqualin Rhodes said even though there is a little trepidation surrounding it, she and Jacob plan to try to get Carson into the trial.
“We would obviously do it if it would save his life or improve his life in any way. It’s just always the common worries that any parent would have trying something so brand new.”
People like Carson who have a mild form of the disease can live longer, but not without challenges. Individuals that have the disease have little to no quality of life, Rhodes said. In order to live, Carson must take medication every four hours. Gene therapy, she said, has the potential to allow people to not only live longer, but have a better quality life without having to take medication.
Last year, the tournament raised $7,000. While there is no target number for this year’s tournament Rhodes said she hopes to raise as much as possible to donate to the University of Notre Dame for further research.
This year, 14 teams signed up for the tournament, each one paying a fee of $250 that will go towards research. Throughout the event, money will also be raised through concessions, a 50/50 raffle and the sale of bracelets, hats and t-shirts. In the past, Rhodes said they have also raised funds through gofundme.com, but this year Rhodes said anyone that wants to donate can send money through Venmo to JRhodes1029.
The event will be held rain or shine. Breakfast options will be available at 8 a.m. and the first game of the tournament is scheduled to begin at 9 a.m. on Saturday.
Even after four years, Rhodes said she remains surprised at the outpouring of support she and her family receive from the community.
“We’re just happy that the community comes together for us and helps us as much as they do. It’s really humbling to witness it and we still can’t wrap our heads around it. Every year as it happens, it’s really an emotional thing for us. … It’s huge. It’s overwhelming.”