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Boy with Duchenne muscular dystrophy faces uncertainty with man's best friend at his side

Posted at 2:08 PM, Nov 24, 2016

CINCINNATI -- Brody Hammons and his dog are a lot like any other boy and his best friend.

But he's not just any boy, and Platty isn't just any dog.

In the past few moths, Brody has lost the strength to walk on his own. He was diagnosed with Duchenne muscular dystrophy, a genetic disorder that causes a progressive loss of strength, starting with the legs and moving up through the body. It's most commonly diagnosed in boys, and many of them end up in wheelchairs before they're teenagers and have heart disease by the time they’re 20. Most men with Duchenne live only to their late 20s.

For a while, he was waiting for federal approval of drisapersen, a trial drug that could help him keep his strength. His mom, Erica Muskopf, believed her son received the drug in a clinical trial at Cincinnati Children's Hospital Medical Center and not a placebo because of the improvement he showed. He was able to climb stairs by alternating feet for the first time in his life, rise from the ground on his own, could walk better and even run.

 

But a Food and Drug Administration panel rejected drisapersen earlier this year. The review team found only inconsistent evidence supporting the drug's effectiveness, according to FDA documents. Also, they found some adverse effects during the trials, including renal injury, low blood platelet count, vascular injury and dermal toxicity.

"This has been a roller coaster of hope and disappointment and more hope and disappointment, and waiting and the waiting is pretty treacherous," Muskopf said.

A new, approved drug could help Brody, but his family's insurance won't cover it. Out of pocket, the drug would cost hundreds of thousands of dollars a year.

"We don't have time," Muskopf said. "Time is not our friend. We need decisions made quickly."

Through it all the past few months, Platty's been at Brody's side. The original Platty was a dog in Oklahoma with a cancerous growth on his snout who gained worldwide attention. He died a few years ago, and Brody's dog, a golden doodle, was named in his honor. Brody's Platty even has his own Facebook page.

"He gives us smiles and memories and is so helpful to Brody," Muskopf said.

Platty is a service animal, so he doesn't just lift spirits: he helps Brody with day-to-day life, too.

"When I drop stuff when I'm doing my homework, he automatically picks it up for me, and I don't have to ask him to pick it up," Brody said.

There's been lots of other support, too: In summer 2015, Brody met his older doppelganger, Andy Dalton, during a fundraiser for families with seriously ill or physically challenged children. The quarterback even invited Brody to his first Bengals game.

His family isn't sure what's next, but Brody and Platty know they'll be facing it together.

"There's lots to be grateful for, there's things we're still hopeful for. We'll take those things day by day," Muskopf said.