In many ways, Landon Conley is like any other 8-year-old boy.
He jokes and plays with his brothers.
He goes to school.
He’s a little shy to meet new people.
What sets Landon apart from so many other 8-year-olds, though, is something that affects his and his family’s lives every day – his muscular dystrophy.
That diagnosis makes his father, Ty Conley, a newly hired firefighter in Fort Wayne, even more determined to gather all the money he can in the department’s upcoming boot collection for the local office of the Muscular Dystrophy Association. It will be the 60th year the MDA has paired with the International Association of Fire Fighters for fundraising efforts.
Conley wouldn’t hesitate to help raise money for the MDA, but now he’s not just doing it because it’s a good cause. He’s doing it for his family.
The Conleys – mom Mindy and sons Trevor and Lucas – know firsthand just how much it matters to have local events such as the boot collection Thursday through Saturday.
You try to say it doesn’t affect your day-to-day life, but it does, said Conley, who adopted Landon in June.
‘Day to day’
It was a little more than three years ago when Landon was diagnosed with Duchenne muscular dystrophy.
The finding came after Landon had noticed a lack of leg strength compared with others his age, along with hearing problems that continued without improvement. Fatigue, muscle weakness and learning difficulties are some Duchenne symptoms, according to the National Institutes of Health.
The Conleys sought an answer, and despite the one they got, they are determined not to let it get the best of them.
You don’t really know what to do, but for me it was, OK, this is what we have. We’re just going to deal with it day to day,’ Mindy Conley said of her reaction to the diagnosis.
Duchenne is one of the more quickly acting forms of muscular dystrophy and is caused by a problem in a gene involved with muscle proteins. It often occurs in people without any family history, the NIH says.
Symptoms manifest only in males, and Duchenne muscular dystrophy occurs in about one of every 3,600 newborns.
Mindy and Ty Conley, who wed in October 2011, certainly have enough on their daily agendas.
Raising three young boys about the same age can be taxing enough, let alone with the added stress of doctor appointments, medical tests and other special accommodations they must make for Landon.
Enter the Fort Wayne Muscular Dystrophy Association.
The group serves 700 local residents afflicted with a slew of neuromuscular diseases, and one of those 700 is Landon Conley.
Ashley Zumstein, executive director for the MDA in Fort Wayne, said local fundraising efforts like the upcoming boot collection give an added boost to those families in the area because money donated locally stays local.
MDA collects for research into a cure and better treatment, and among other services, it provides support groups or helps people connect with others in similar situations and experts to learn about neuromuscular diseases.
If we have an issue or question, we call them, and they figure out how to get it fixed, Mindy said.
Putting a face to it
Despite how Landon’s condition affects day-to-day life for the Conleys, he doesn’t yet know why he gets special accommodations or has to go to a specialist in Columbus, south of Indianapolis.
We don’t really talk about it much. He knows he has problems with his legs, but I want him to be a regular 8-year-old boy, Mindy said.
Since she left work a couple of years ago, she has more time to make sure Landon and the other boys get the focus they need.
Now that I don’t work, I don’t know how I did before, she said.
With Mindy at home and Ty’s work schedule at Fire Station 10, they get more family time than most, but life can still be taxing.
They have a firsthand view of how donations to the MDA help, and it’s made this year’s boot drive a little more personal for the Fort Wayne Fire Department.
They know it’s for a good cause, but when you can put a face to it, it touches you a little more, said Randy Zion, a captain with the fire department and MDA fundraiser chairman for 18 years.
Last year’s collections reached a little more than $98,000, and Zion, Zumstein and the Conleys see no reason not to come in with a six-digit total this year.
With more than two-thirds of every dollar donated to the MDA going toward research and services for families, it’s an organization Ty and Mindy Conley are proud to support and use to full advantage.
I just want to encourage everybody to get out there and fill a boot, Ty said.