Chris and Melissa's son Case is battling Hunter Syndrome and they have come to The Doctors to share their story and spread the word about their fight to find a cure to this deadly disorder.
Hunter Syndrome is a genetic disorder caused by a missing or malfunctioning enzyme, which causes molecules to build up in harmful amounts in the body. It usually occurs in boys and there is currently no cure. The disorder can rob children of the ability to walk, talk, breathe and possibly end their life in their teen years.
"Processing the news that your son has this disease that could end his life at age 15. I was angry that there wasn't a thing that I felt like I could do about," Chris tells The Doctors.
Case is part of a drug trial that aims to stabilize the cognitive decline associated with Hunter Syndrome, which required undergoing over 80 spinal taps. "It's not a long-term solution for any child. We need an actual cure. He needs something now, and the medical science is there to save this generation of kids, all we need is to fund it," mom Melissa says.
The Doctors also welcome Hunter Syndrome expert Dr. Patricia Dickson to share more about the genetic disorder. She explains that kids with the syndrome often do not grow and develop skills at the same rate of other kids. Stiff joints and also a large liver and spleen are also seen in children with Hunter Syndrome. She notes that many kids with the disorder are not initially properly diagnosed.
Case's parents started the foundation Project Alive in hopes of finding a cure. They have begun funding gene therapy and hope to begin a clinical trial. The foundation has raised $500,000 dollars but their goal is $2.5 million for the clinical trial.
The Doctors reached out to CosmetiCare Medical Director Dr. Michael Niccole and Orthopedic spine surgeon Dr. Hooman M. Melamed, who both made generous donations to Project Alive. If you would like to help support the work of Project Alive, visit their website.
The Doctors were also lucky enough to have Case join the show, where we surprised him with messages from some of his favorite NBA stars including Charles Barkley, Blake Griffin, Donovan Mitchell, Mike Muscala and more! Watch the video below to see all the message from the NBA players and find out the amazing gifts we arranged for Case from NBAStore.com.
Since the taping of this episode, Project Alive has received a $250,000 donation from the Mark Cuban Foundation. Mark Cuban first became aware of Hunter Syndrome when Steve Nash, one of his players in the early days of Cuban’s ownership of the Mavericks, introduced him to his childhood friend Simon Ibell. Simon, one of the approximately 2,000 people worldwide who suffered from Hunter Syndrome, sadly passed away due to complications from the disease in 2017.
“Mark’s generous donation allows us to complete gene vector production and begin the clinical team’s work toward opening the trial,” Melissa Hogan, Project Alive’s president, said in a statement. “We’re so close to being able to offer the tangible hope of a cure to families affected by this disease. I know that Simon would be proud and honored if he were here as we try to finish strong toward our goal.”