Community helps youth with muscular dystrophy purchase van

Like most twelve-year-old boys Tyler Mischke’s bedroom reflects his interests. The walls are covered in posters featuring characters from Skylanders, his favorite video game.

A television in the corner is set up for video game play, and a video game magazine sits on the edge of the bed. He aspires to design video games when he grows up.

However, unlike most twelve-year-old boys, Tyler has a lot more to contend with than conquering the latest video foes.

Tyler has Duchenne muscular dystrophy, a genetic disorder that occurs mostly in boys, and leads to progressive muscle degeneration.

Tyler was five when the Mischkes received his diagnosis.

Often there are signs in early developmental milestones that indicate Duchenne, such as sitting, walking, speech delay or an inability to keep up with peers.

The Mischkes first realized something might be wrong when Tyler wasn’t able to ride a bike, and struggled getting up.

Initially doctors told them it was a cognitive developmental delay, but April Mischke, Tyler’s mom, knew that wasn’t the case.

One day they were driving by an orthopedic clinic in Kalispell and saw the clinic was offering free screenings. They decided to stop in, and the doctors quickly recognized symptoms of muscular dystrophy in Tyler.

“We didn’t know what it was,” April said. The doctors referred the Mischkes to Shriners Hospital for Children in Spokane, and April began doing research.

“We just started reading everything, and talking to people,” she said.

Duchenne muscular dystrophy occurs when the X-chromosome has a genetic mutation that causes a lack of dystrophin. Dystrophin is a protein that acts as a kind of glue, holding muscles together by maintaining the structure of the muscle cell. Without dystrophin muscles can’t operate properly and suffer progressive damage.

Typical boys with Duchene lose their ability to walk between the ages of 10 and 14. Usually by their late teens they have lost the strength in their upper bodies and need help breathing at night.

A weakening respiratory system and heart issues also happen over time.

The genetic disorder is often carried by the mother, but about 35 percent of a cases occur because of a spontaneous mutation, which is the case with Tyler.

There is no cure for Duchenne muscular dystrophy, and until recently boys with the disease did not live much past their teens. However, advances in cardiac and respiratory care as well as therapies to slow the progression has increased life expectancy and most men with the disease now live into their late twenties.

With Tyler’s transition to fulltime wheelchair use, his family has been working hard to make adjustments to accommodate him.

They moved from their two-story home in Kalispell, to a single story home in Ferndale, near family. A friend built a ramp to the house, and April found a Medicaid grant that allowed them to completely remodel a bathroom to be accessible for Tyler.

With the house in order, the next project was to secure a van that can hold not only Tyler in his chair, but the rest of the family as well.

Tyler spends a fair amount of time travelling for treatment, and to participate in experimental trials. Recently Tyler had been flying to Portland once a week to be part of trial. However, now the Mischke’s have found a local nurse who can come administer the treatment, which should cut Tyler’s trips to Portland down to every 12 weeks.

Tyler also has to travel to Spokane and Kalispell regularly physical therapy and doctors appointments.

After Tyler got his chair his parents dealt with his transportation by attaching a ramp to the back of their Suburban, picking Tyler up, putting him in the car, and then driving his wheelchair onto the back. If the weather was bad they had to cover the chair so water didn’t ruin the battery that operates it.

Not only was this setup not ideal, but it really wasn’t safe for Tyler or his parents, April said, particularly during snowy and icy winters. April recalled one time when she almost dropped Tyler after slipping on the ice.

Unfortunately used conversion vans that accommodate wheelchairs are hard to find, and new ones are quite expensive, starting at around $55,000 to $70,000.

Costs for Tyler’s care are already high. His wheelchair cost $15,000.

The Mischke’s didn’t know how they were going to afford the van that Tyler needed, so they set up a page on GoFundMe.com. The crowd funding website allows people to make donations toward causes posted there. They also set up an account with Park Side Credit Union for people to donate, to help buy Tyler a van.

Then, the Mischke’s had a stroke of luck, and made a connection with a paraplegic man in Portland who was selling his conversion van, and it was perfect for Tyler.

The 2004 van was set up with a lift for Tyler’s wheelchair, and straps to hold the chair in place. It was big enough to hold their entire family and their dogs, and only had about 62,000 miles on it.

“It’s everything we needed,” April said.

However, the Mischke’s hadn’t raised enough money yet.

They were trying to figure out what to do, afraid the van wouldn’t last on the market long, when a donor who wished to remain anonymous, contacted April through Facebook, and offered to loan them the money needed for the van.

In March Tyler’s father and Grandmother drove to Portland to get the van and brought it back to surprise him.

With the van secured April’s next worry was raising the $15,000 needed to repay the lender.

Tyler’s fifth grade class at Bigfork Elementary held a bake sale and raised $652 in 2 hours, for the van fund. Friends and family shared Tyler’s story on social media, and now they Mischke’s are about a third of the way to their fundraising goal of $15,000, with about $4,300 raised.

The next fundraiser to pay for Tyler’s van will be a storage unit sale, and raffle at Ferndale Mini Storage on is Friday and Saturday June 26 and 27 from 8 a.m. to 5 p.m.

Anyone wanting to help in anyway by donating items to sell at the sale or sell raffle tickets would be greatly appreciated. Pickup trucks needed to help remove items from storage unit after sale. 

One raffle prize is a $60 gift certificate for two at the Bigfork Summer Playhouse, which can be used for any play thru August 22.