Local family shares story, raises funds to research cure for Sanfilippo syndrome
Nov. 22—AUSTIN, Texas — Five-year-old Simon Croke is quite the basketball star for his age.
But as his parents watch him shoot hoops, they can't help but wonder how long he'll be hitting those three-point shots. The youngster has Sanfilippo syndrome, a rare genetic neurodegenerative disease characterized as "childhood Alzheimer's."
The Crokes, originally from the Toledo area, are using their story to raise funds to research and eventually cure the terminal disease. With the help of the Cure Sanfilippo Foundation, they launched a GoFundMe campaign — HelpSimon.com — last week, with a set goal of $1 million.
The GoFundMe includes a brief video that not only shares Simon's love for basketball, but the struggles the family has endured while seeking a cure. Currently there is no FDA-approved treatment for the syndrome.
Glenn O' Neal, president of Cure Sanfilippo Foundation, said the foundation is proud to partner with the Crokes and share Simon's story.
"We believe if we can get this video, campaign, and site shared everywhere we can, people will come to the aid of this family. I think other parents can put themselves in the shoes of these parents and say, 'Gosh, if it were my child what would we do?' They would need help, and it's a hard thing to go out and ask for help, but Simon's [family] has," he said.
Mr. O'Neal added that it's shattering to imagine Simon one day losing his ability to play basketball.
"Simon has this incredible gift and skill for basketball that developed when he was really young. It's just heartbreaking to think that these types of skills will go away, as will everything else, unfortunately," he said.
According to Boston Children's Hospital, the rare disease often results in seizures, developmental regression, delayed speech, and similar features of autism spectrum disorder such as difficulty with social skills and communication. Simon's mother, Alina Croke, said children with the syndrome eventually reach a plateau in their development, then regress to the point they can no longer walk, talk or eat.
"I wish it wasn't every single day that he's doing something, and we don't have it in the back of our minds, 'This could be it. He could lose this today and start declining tomorrow'," she said.
Time is of the essence for these children, lending a sense of urgency to the fund-raising campaign.
"It breaks your heart as a parent to think that something he loves doing such as running, he'll lose if we don't get him and other kids effective treatment options quickly. These kids don't have time to wait. They don't get into adulthood, and hopefully, we find a cure. They die as children," Mrs. Croke said.
The journey to a diagnosis was tumultuous for the family, as it took nearly two years to learn Sanfilippo was the root of all their concerns.
"We knew something just wasn't right during his first year. He just wasn't reaching milestones. His first word didn't come until he was about 18 months, and that's extremely atypical. He didn't take the first step until almost one and a half," Mrs. Croke said.
After several specialists, various therapies, tests, including a brain MRI and EKG, the family learned of the genetic syndrome.
"I just lied in bed and cried all night. We didn't know how quickly his decline would come. We just want more good days for our sweet little boy, and I told my husband, 'Let's just sell the condo, buy a mobile home and let him see the country. Let's just spend time with each other'," Mrs. Croke said.
"I just wanted our sweet little boy to love and to be loved. If at minimum, his skills are stripped from him, I just want him to be loved and be able to love and that's so the case. He is so loved and he gives so much love," she said.
Mr. O' Neal said the Help Simon is set to assist children with the same variation of Sanfilippo as Simon. He explained that there are currently four variations of the disease.
"Help Simon is a campaign to help fund research to try to find treatments and bring clinical trials for the disease. There are two new research pathways that have a lot of potential, and the goal is to try to move these both forward to clinical trials for children who specifically have Sanfilippo type B, which is the type little Simon has," Mr. O'Neal said.
Mrs. Croke said it's imperative the family reaches back to its Toledo community for help.
"We're fighting to find him a cure with the help of our community, those that we spent a good 30 years of our lives growing up in Toledo. We're reaching out to the communities we've developed through our schooling, places of employment," Mrs. Croke said.
Mrs. Croke is a graduate of Central Catholic High School, in the class 1995, and she went on graduate Bowling Green State University in 2001 and the University of Toledo in 2007. She worked as a science teacher at Springfield High School from 2004 to 2007.
Mr. Croke is a 1998 graduate of Northview High School and worked as a service adviser at Yark Automotive and Taylor Cadillac post-college.
Mrs. Croke added that each time someone shares their campaign video, it's a positive impact on their goal.
"We're hoping they help us spread the word by spreading the video far and wide to any and everyone they know. The farther we can spread this video, the more compassionate people will hopefully see what an amazing little boy Simon is," she said.
Simon's grandmother, Becky Croke, who still lives in the area, said her family relies on its Toledo area community to assist in their financial goal.
"We always say it takes a village to raise a child, and that's true in this case," she said. "We're hoping to have friends and family spread awareness on the condition with as many people as they can by sharing the video. We also wish for donations to the cause to make further research possible."
Amid the hardships, it's Simon's loving spirit that keeps the family fighting to find a cure.
"He's so social. He's delayed in his expressions, but from what he has, he's so engaging. He's a bright light that enters the room with his smile, warmth, and eye contact. He's just infectious," Alina Croke said.
She added that his therapist praises his ability to uplift their spirits.
"He's just so loving in his interactions and so engaged," she added tearfully. "He just makes you feel like the time spent with you is so desired and wanted."
