Twins Liam and Seth Kiefer love competing against each other.
“We’re really competitive,” Seth said. “Yeah that’s exactly what I was gonna say,” Liam said. “And usually I win,” Seth added.
Sports is one of their favorite things to do together,
But– they lean on each other in more ways than one.
“Everyone we meet they’re always like they’re always shocked at what we can do,” Seth said.
It was around 9 months’ old when they started daycare and their mom Christina Morton was pulled aside at pick up.
“First day when I picked them up she said something’s different,” Christina said. “Something just feels different.”
After months and months of tests, at just 18 months old, both Liam and Seth were diagnosed with Emery Dreifuss Muscular Dystrophy.
“It is rare, its progressive muscle wasting and it’s very different for different people that have it,” Christina said.
Both boys lost the ability to walk around third grade.
“Sometimes Seth or Liam will look at me and they’ll say ‘well it’s not fair.’ And I’ll agree with them. You’re right it’s not fair. So we can sit and pout about it or we can just agree and move on,” Christina said. “Some days we do have tears and our moments.”
But more often than not–
“I just focus on things I can do,” Seth said. “It’s really fun doing the things we can do,” Liam said.
Their love of sports, and competition, pushing mom to find camps uniquely suited for them to participate in.
A chance encounter– leading them to Mary Free Bed’s Junior Wheelchair Sports Camp this summer.
“It was really fun and everyone got along well,” Liam said. “No one was left out.”
One major difference for the boys– this camp required the use of manual wheelchairs– something they had rarely used before.
“A lot of our muscles were sore but then I just wanted to go right back,” Seth said.
“The first three days my hands and arms were sore,” Liam said. “But then the last day I was perfectly fine because I was used to it.”
The first day both boys needed quite a bit of help getting in and out of their wheelchairs– but as the camp went on…
“Seth was going to go to the bathroom and I saw him get into his chair by himself so I wanted to try it and it didn’t work,” Liam said. “So the next day I did try and it did work.”
“It felt good because usually we’d have to get a couple counselors to come help us but then we only needed one to just help hold the chair,” Seth said.
The entire camp experience that meant a whole lot to mom Christina.
“They just had such an amazing time,” Christina said. “You’re in an environment where nobody’s looking at you like you’re different.”
Leaving camp with an even greater outlook on life.
“They can be independent. A sense of feeling maybe someone is worse off. And look at their attitude so maybe I don’t have to think somethings not fair,” Christina said.
“Just to come in at the end of the day and not feel that I’m alone in the world. There are other kids. They are other opportunities.”
And they’re already looking forward to going back next year.
The boys are always in need for different durable medical equipment and it is not always covered by insurance. If you’d like to make a donation to them, click here.
To learn more about Mary Free Bed’s adaptive sports programs including the Junior Wheelchair Sports Camp, click here.
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