- Associated Press - Wednesday, June 14, 2017

TIPTON, Ind. (AP) - Alexander Davis has limited use of his muscles, so when the wheelchair ramp leading to his house started to fall apart his life became more difficult.

Davis, a 9-year-old from Tipton, suffers from Spinal Muscular Atrophy, a disease that targets the nervous system and voluntary muscle movement.

His mother, Anastasia Davis, said rainy days generally meant the family would stay inside. With the ramp being so slick and rickety, it wasn’t worth the risk of seeing Alexander go sliding out of control; his wheelchair, which can reach speeds of 6.5 miles per hour, weighs around 300 pounds.

Spinal Muscular Atrophy has made getting around for the Davis’ more difficult. It’s hard to maneuver Alexander in and out of the bathroom and the family van, and as he grows, it only becomes more of a challenge.

But being unable to get out of the house was not an option. The Tipton Fire Department made sure of that.

The Davis’ installed their wheelchair ramp six years ago. It stretches from the sidewalk to the porch and back down to the side of the house, providing two ways off the porch. Monday, Alexander had only one way off the porch as his friends, firefighters with the Tipton Fire Department, worked to repair the section leading to the sidewalk.

The Tipton Fire Department became involved a few months ago when one of Anastasia’s friends, Dawn Dunn, wanted to figure out a way to help the Davis family. She asked Anastasia what their biggest need was at that moment, and Anastasia mentioned the rickety ramp.

Dunn called the fire department and asked if they would be willing to volunteer their time to rebuild it. The only barrier was funding for the materials, so Dunn called a Zumba group, the Zumba Locas of Tipton, and organized a fundraiser which raised over $1,300.

After the fundraiser, the fire department and Anastasia tried to figure out a good weekend to work on the ramp, but they were met with rain, cold weather and times when Alexander couldn’t be there.

They decided to work on the ramp during the week, and Monday they began tearing up the old ramp and rebuilding it.

As the firefighters worked, Alexander zoomed around the front yard. He met the firefighters three years ago, and they’ve formed a close bond. Jeffrey Ogden, a firefighter with the department, said it raises money each year for the Muscular Dystrophy Association, which does research on Spinal Muscular Atrophy.

Though Alexander has trouble getting around, the disease hasn’t stopped him from pursuing his hobbies. He enjoys video games, visiting Chuck E. Cheese’s and playing Pokemon Go.

“Normal kid stuff,” he said. “I’m basically a Pokemon guy. I like the electric types (of Pokemon) because I have a power chair.”

His chair has headlights, fog lights, turn signals and adjustable speeds. He’s had this particular chair for four years, and he’s eligible to get a new one every five years.

“The first chair was great, but then his needs change,” Anastasia said.

His first wheelchair, which he got when he was 18 months old, he called “Choo Choo” because he was interested in trains at the time. Now his wheelchair is named “Super Hero” to reflect his new interest.

Since the end of May, Alexander has been receiving a new Spinal Muscular Atrophy treatment, Spinraza, that was approved by the FDA in December. Spinraza is the only such treatment currently on the market, according to its website.

Alexander has been receiving the shots every two weeks, and soon will receive them every four months. It won’t cure him of the disease, but it has led to some improvements. For the first time ever, Alexander can wiggle his toes.

“It’s pretty awesome,” he said.

“Nothing stops this kid,” Ogden said. “He’s always in a great mood. We’re very excited, very happy to help him out.”


Source: Kokomo Tribune, https://bit.ly/2ro5QBU


Information from: Kokomo Tribune, https://www.ktonline.com

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