Mother's intimate moments with her dying son shed light on life- - WMC Action News 5 - Memphis, Tennessee

Mother's intimate moments with her dying son shed light on life-saving mission

Source: Facebook Source: Facebook
MEMPHIS, TN (AP) -

It's a Memphis mother's raw, revealing, and emotional struggle showing the daily morning routine of dealing with her son's deadly disease, and it's striking a chord with people around the world. But, it's the bigger struggle she hopes to bring more attention to.

Stacie and her son Dalton recently went to Washington to testify and push for FDA approval for an experimental drug that would help young boys who are fighting a terminal form of Muscular Dystrophy.

The video she posted on Facebook now has more than 40,000 views. It's an intimate look into Stacie, Dalton, and their entire family's lives. Her son was once a healthy boy, running, jumping, playing super heroes. Now, at 11-years-old, he's unable to walk, unable to get himself out of bed, he has to wear a diaper.

You can watch the entire video here:

Dalton has Duchenne Muscular Dystrophy. It's a particularly despicable disease that attacks young boys, and it eventually kills them. For now it's left Dalton, a lively fun-loving boy, largely trapped inside a body that does not want to cooperate with him. In the video, Al-Chokhachi talks to Dalton about the things 11-year-olds are interested in, like movies and video games, as she helps him empty his bladder into a plastic jug, changes his diaper, and powders his bottom. After she prepares him for the day, she straps him into a hoist to lift him out of bed and place him in his wheelchair.

"If any of you did not understand what Duchenne does to the boys and to the caregivers, now you have a small glimpse," Al-Chokhachi said after Dalton wheels himself out of the bedroom, "So be thankful for your healthy children, be thankful for each day you're given."

But the most important part of her message is the new experimental drug that Al-Chokhachi and others feel could be a cure for boys like Dalton. They are urging the FDA to approve the drug, eteplirsen. It made a difference for the boys suffering with the disease in a clinical trial. But a US Food and Drug Administration presentation on the drug was not positive.

But the panel doesn't have the final say.

"Pray that the FDA passes this drug that is scientifically proven to work," Al-Chokachi goes on to say.

The FDA must make its final decision by May 26.

Unfortunately testing has shown that the drug will not save Dalton's life, but he and his family are dedicated to getting it through because they believe it could be a cure for others

"Boys are walking, boys are gaining some of their losses back which is unheard of in Duchenne. It's time for the FDA to do what they are in place to do," Al-Chokachi said.

Editor's note: Dalton's mission has become close to the heart for WMC "Biker Dad" Blogger Chris Best. Dalton even challenged Chris to a motorcycle race which you can watch here:

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