A 4-year-old Manitowoc boy with special needs has had his wish granted by the Make-A-Wish Foundation.
Henry Tyeptanar, the son of Michael and Emily Tyeptanar, was born with a rare, fatal disease called Myotubular Myopathy, which affects one in 50,000 males.
People with this condition have muscle weakness and decreased muscle tone which is usually evident at birth.
During a recent interview with Seehafer News, Henry’s mom told us her son, who is in a wheelchair and is trached, uses different communication styles in speech therapy and was told he could wish for anything he wanted.
“He’s always been obsessed with Disney,” Emily explained. “He loves Finding Nemo especially Crush the turtle from the movie, and he made his wish to meet Crush at Epcot.”
Emily explained that the wish was submitted and it took a couple of months to hear back from Make-A-Wish officials, but, it came early this year.
“They’re like, ‘We’re ready to make his wish come true. Let’s start all the paperwork for it,'” she said. “It’s just kind of surreal now. So, we’re in the late stages of that where they are finalizing dates. He’ll be able to meet Crush and he’s very excited about it.”
Michael Tyeptanar said their philosophy ever since Henry was born has been to enjoy one day at a time, trying not to look too far ahead and get caught up in the stressful parts of caring for someone with medical needs.
“With COVID and everything, it just kind of added an extra burden and made it seem like the walls were closing in,” he explained. “I think everybody felt that way being shut in, but having the opportunity to make some special memories with him I think is something we’re all looking forward to doing.”
Michael emphasized that faith and perseverance play out in their lives.
“You know there was so much that was out of our hands and not knowing anything about what was going on, just kind of knowing he wasn’t doing as well as he should’ve been doing when he was born,” he said. “We gave all that to God and just said you know whatever happens we were taking it one day at a time and enjoy whatever time we had with him. We also had a lot of people lifting us up in prayer.”
He added, “a lot of people have given of their time and resources, making them realize they had a community that had their backs.”
Emily said, “it’s so beautiful to be in this community where everyone is just supporting of each other and we definitely relied on our faith to get us through some really hard times.”
For now, they’re getting Henry ready for 4-K at Riverview School this fall and are planning to take a fun, family vacation to Disney World this winter.
For more information on Myotubular Myopathy, go to the Joshua Frase Foundation website for the latest efforts to find a cure for the disease.
