On January 30, the Cumberland County Playhouse (CCP), in Crossville, Tenn., opened its student-volunteer production of “The Wizard of Oz” one day early for a sold-out benefit to support four-year-old Rylan Hyder, who was diagnosed with Sanfilippo syndrome.
Mandy Dearman, assistant to the producing director and the volunteer coordinator at CCP, contacted Nicole Simmons, Hyder’s mother, about organizing this benefit. Simmons said, “We went to high school together, and she called me up one day. Rylan has a Facebook page, … and everybody has seen it on there and wanted to do something for him.”
“Everyone’s been very nice,” Simmons said, “and we’re very accepting of that. We appreciate it!”
Bryce McDonald is the associate producing director and public relations coordinator at CCP. While introducing the production, he said, “Being here tonight is such a beautiful show of community love, and it’s all for that little boy, so thank you all so much for that. We at the playhouse would like to thank our very own Mandy Dearman for bringing this to us. … We’d also like to thank Tams-Witmark. That’s a licensing house that owns ‘The Wizard of Oz,’ and they allowed us to do this performance and to have a voucher system, so you could purchase a voucher to see the show. …”
CCP donated all of its ticket and concession sales from the evening to the Hyder family to help with their travel expenses to Columbus, Ohio, where Hyder will be evaluated for a clinical trial at Nationwide Children’s Hospital.
Many in the audience wore “Saving Rylan” shirts to show their support for the family. The back of the shirts read “’I can do all things through Christ.’ –Philippians 4:13” and “Finding a cure for Sanfilippo syndrome.”
Doctors diagnosed Hyder with Mucopolysaccharidoses or MPS III-A – also known as Sanfilippo syndrome – on November 21. His body cannot produce the enzymes necessary to reprocess materials in cells and causes the cells to store biological materials that the body should be able to remove naturally. This build-up in the cells may lead to the degeneration of not only the heart, joints and bones, but also the respiratory and central nervous systems. Hyder is specifically missing the heparan N-sulfatase enzyme.
Simmons said, “[Prior to the diagnosis, Rylan] had been having some gastro issues, which is what I thought it was because his belly would get distended. Blood work showed increased liver enzymes, enlarged spleen and liver, so that’s why they continued with more testing because they had thought it might be a genetic disorder. …”
Simmons and her husband Jonathan Hyder will take Hyder to Nationwide Children’s Hospital this month for evaluations to prepare for a clinical trial.
Simmons said, “The clinical trial hasn’t made it through the last FCA approval, so, as of right now, there’s no set date when the clinical trial will start. … They’re hopefully proposing sometime this summer.”
At Nationwide Children’s Hospital, the Hyder family will be working with neurosurgeon Dr. Kevin Flanigan, the clinical research coordinator of the trial; Dr. Kim McBride, a geneticist; and Dr. Haiyan Fu and Dr. Doug McCarty, researchers in gene therapy, at Nationwide.
“They have to get the medicine just so-so for humans,” said Simmons. “So, hopefully, there are no set backs. It’s a virus they will inject into the spinal column. What that virus is supposed to do is to give them the enzyme that they are missing to stop the accumulation of heparan sulfate on the brain. If everything goes OK, it should be like a one-time treatment type deal. That’s the whole plan.”
Since Hyder’s diagnosis, Simmons has researched the Sanfilippo syndrome and made connections with several support groups. She said, “The National MPS Society is a good support group. Our private Facebook page [for MPS] is a very good support group because the people who are on that Facebook page only have children with this disorder. … Nobody else can see what’s written on it. … That helps a lot.”
The Hyders have three sons: Gage, 7; Brayden, 6; and Rylan, 4. Simmons said, “[His brothers] are good with him. They’re still young. They don’t totally get it. We answer questions as questions come about. It’s kind of hard explaining that to a six-year-old and a seven-year-old, so we just take it as it comes.”