By Abby Farrell
Noah Bohan has always been a silly and sweet kid who loves to read (horror books especially), meet people and learn new things.
But as Noah Bohan reached kindergarten, his parents and teachers noticed some sudden changes in his health, and they weren’t sure what was causing it.
Noah Bohan’s mother, Maren Bohan, recalled first noticing that he was starting to lose his eyesight when he was in kindergarten because he couldn’t see the board and kept bumping into things as he was walking. Initially, they thought Noah Bohan may just need glasses, but as his vision got worse, there was a cause for concern. By the end of the school year, Noah Bohan had almost completely lost his vision.
His parents and teachers also noticed a sudden change in his temperament as well. Noah Bohan, who was
typically a happy-go-lucky kid, suddenly began experiencing sudden mood swings in which he became angrier and more combative.
Six months after the end of his kindergarten year and after months of tests, Noah Bohan was officially diagnosed with CLN3 Batten disease.
“It’s the hardest thing in my life that I'm currently living through, and I'm constantly finding ways to cope and navigate what our future holds,” said Maren Bohan about her son’s diagnosis.
Batten disease is a rare neurodegenerative disease that is caused by a cell’s inability to recycle a cellular waste called lipofuscin, resulting in individuals first commonly experiencing vision loss followed by cognitive difficulties and epilepsy. Currently, Batten’s disease does not have a cure and it is terminal.
However, Noah Bohan, who is now 10 years old, never lost his sense of curiosity and still wanted to learn about anything he could, which gave Maren Bohan an idea. Last year around the holidays, she decided to start a bucket list of activities for her son as an inexpensive way to allow him to get out and have unique experiences.
“He's a very inquisitive child; he likes to meet people and get to know them, and that's where my goal of creating the bucket list for him began,” Maren Bohan said. “Noah really likes to get out in the community, so I thought it would be a fun way for him to be out doing something every day.”
Through the Facebook page “Noah’s Battle Against Batten,” which was started to share Noah Bohan’s story, his mother put a call out to their local community in Baltimore, Maryland to see if anyone would be willing to help him add new and fun outings to his bucket list.
Several people responded, and now a year later, Noah Bohan has experienced things like visiting a police station, riding in a motorcycle sidecar and meeting animals at the Maryland Zoo in Baltimore.
In February of this year, Noah Bohan was able to cross one more activity off of his bucket list: figure skating.
With the help of his former kindergarten teacher Tracey Staab, who is currently on the board of the Baltimore Figure Skating Club, in February of 2023, Noah Bohan went to the Mt. Pleasant Ice Arena, where he was led through a skating lesson by six members of the Baltimore High School Skating Team, which Staab’s daughter Selene Staab is a part of.
Tracey Staab, who has stayed in touch with the Bohan family since Noah Bohan was in her class, was eager to make this happen for her student.
“He and his family are going through something that unfortunately no child should go through, but he deserves every experience that a child his age should have,” Tracey Staab said. “The figure skating club and the kids on the team were able to modify the lesson to give him that experience. He might not be able to see the ice, but he could feel it and he could taste it. It's one of those experiences that all kids should have regardless of ability.”
The team gave up their practice time to teach Noah Bohan as well as his brother, Logan Bohan, the basics of skating, including how to fall and get back up and how to march on the ice.
“I just thought that it was so sweet and selfless to give up their practice time to work with Noah and Logan and show them a good time,” Maren Bohan said.
Selena Staab was one of the athletes who was on the ice helping to teach Noah Bohan the basics of skating, including how to fall, get back up and march on the ice.
“Getting him to be stable on the ice was a challenge that I was not anticipating, but once he was comfortable just standing still on the ice, it was pretty usual. So, he did great,” Selena Staab said.
Noah Bohan was eventually able to stand and skate on his own for a short period of time.
When you ask him, there was no question that his favorite part of the day was playing with the “snow” made from the ice shavings created when skates skid across the ice.
For the team, the experience was rewarding because they were able to see how much Noah Bohan was enjoying himself.
“The best part was just seeing his joy, his genuine reaction to everything and how much fun he was having,” Selena Staab said.
At the end of their day, Noah Bohan was named an honorary member of the Baltimore Figure Skating Club and was given a specially made t-shirt so he could show off that he was now a proud member.
As a mom, it was meaningful for Maren Bohan to see Noah Bohan get on the ice, not only because of the willingness of the Baltimore High School Skating Team to guide him through a lesson but also because she witnessed a more confident side of Noah Bohan that she hadn’t seen before.
“When he lost his eyesight, he had gotten hurt so many times when he was losing his eyesight from obstacles that he couldn't see as his eyesight was slowly tapering off, and he had developed this fear of trying things because he was afraid of getting hurt,” Maren Bohan said. “To see him be able to trust the figure skating team, and for them to see him try something new that might have been a little bit scary but be so excited just felt really special.”
Like Noah’s Battle Against Batten on Facebook to follow along with his health journey as he fights Batten disease and to see what adventures he crosses off his bucket list next.
