Waterloo Junior High School recently finished a T-shirt sale fundraiser to benefit an organization that helps people with a rare disease.
One of those people is WJHS student Ayden Isaacs.
Mike Isaacs, Ayden’s father, credited WJHS employees like Kim Habermehl, Stacey Cawvey and Christene Baldwin with making the fundraiser happen.
“They drove all of this for the research and getting awareness,” the Waterloo man said. “They took it by the horns and said ‘this is what we’re going to do.’ We absolutely cannot thank them enough. It’s been incredible what the teachers there have done.”
The $1,500 donation went to the Tatton-Brown-Rahman Syndrome Community, which helps people with TBRS.
Only about 125-135 individuals worldwide have been diagnosed with that disease, according to Mike.
That is because, in addition to being rare, the syndrome was only discovered and named in 2014 and can only be diagnosed via genetic testing.
TBRS is caused by a mutation in a certain gene and is “characterized by faster than normal growth before and after birth, subtle differences in facial features and intellectual disability,” according to the U.S. National Library of Medicine.
Ayden was diagnosed with TBRS in 2015, one of the first six people to get the diagnosis.
But Mike and his wife, Jennifer, knew there was something different about their son long before that.
Ayden had extremely low mobility as a baby. He did not walk until age 3.
“We could tell that he was delayed,” Mike explained. “So we immediately had physical therapy and occupational therapy done as soon as we could.”
When Ayden got his diagnosis, his parents had mixed feelings.
“Because it was so new they still couldn’t say ‘if you do this, it will fix it.’ They basically said, ‘at this point, there’s no cure for it,’” Mike recalled. “It was a relief to know what it was so we could stop searching. So it was kind of bittersweet. It’s fantastic to finally know what it is so now we can attack this.”
TBRS impacts individuals in different ways.
For Ayden, that includes problems sleeping, growing quickly, having developmental delays, being flat footed and more.
While they may not be able to cure their son, Mike and Jennifer have been active in helping him through TBRS Community, both serving in leadership roles in the organization.
Much of their work has involved raising the $212,000 necessary to create a repository for people with TBRS to list their symptoms.
Most of the WJHS donation went to that database, the goal of which is to connect researchers and patients so the syndrome can be studied further.
“This is going to drive a lot more research,” Mike said. “That’s our goal is to really drive awareness, which has been really good for our community.”
Other funds from WJHS may be used to help pay for people to travel to the TBRS conference in New York in October.
Mike acknowledged this work may not help Ayden, but it could help someone else in the future.
“So maybe it doesn’t cure Ayden, but… maybe it cures the next kid in 20 or 30 years,” he said.
Still, Mike said his family appreciates the school’s support of the TRBS Community.
“It’s been absolutely overwhelming for us, not only that they wanted to do this for us but that they are taking such an initiative to drive this on their own,” Mike said. “We really couldn’t put it into words how appreciative we are.”
That appreciation also extends to the students at the school.
“The kids there have been unbelievable,” Mike said. “It’s a major thing for us for Ayden to be accepted, and that we can’t thank the community, the teachers and the kids at the school enough for doing that.”
For more information on TBRS or to stay updated on fundraisers, visit Tatton-Brown-Rahman Syndrome Community on Facebook or visit tbrsyndrome.org.