Since we first met Leah Messer nearly a decade ago, the Teen Mom 2 star has taken us along for the emotional and inspiring journey of her daughter Aliannah’s battle with muscular dystrophy. In the early days of the show, Leah, her ex Corey Simms, and fans alike were thrilled to learn that she finally had a diagnosis — Titin’s muscular dystrophy, a rare form of the disease that hadn’t ever been seen in children — but worried about what that meant for her future. Now, an expert — who has never treated Ali — is weighing in on her condition.

Jill Frauenheim, MS, CGC, a Genetic Counselor at Ann & Robert H. Lurie Children’s Hospital of Chicago, told Radar Online that Ali is “deteriorating” and that Limb-Girdle Muscular Dystrophy with a Titin Gene Mutation could cause “weakness of muscles.” She added, “The weakness starts in areas closest to the shoulders, upper arms, hips, and thighs. Those that have muscular weakness, even the severity of that can vary. Some kids with this, they learn to walk and remain walking over the age of 20. Others are more severe and start needing additional help between 10 and 20.”

During the reunion special, Leah explained how her daughter “continues to get weaker” and will “probably” need home care at some point. “The hardest part is her physically deteriorating and knowing these things are happening to her,” the 26-year-old explained. “You don’t know what to expect or when to expect what’s going to happen, but you know something is going to happen.” Learn more details about the disease below.

What’s the average life expectancy for someone with muscular dystrophy?

The average life expectancy for someone with Duchenne muscular dystrophy — the most common kind — is 26 years old. However, these statistics range greatly depending on the kind of MD the patient has, and there’s no definite answer when it comes to Titin’s for Ali, being that she’s the youngest person (and one of about 20 patients total) with this form of the disease. 

How does the disease affect Ali?

When Ali’s long-term doctor revealed the diagnosis, he told Leah and Corey, that — over time — Ali would lose muscle strength and respiratory function and will likely be confined to a wheelchair eventually. However, Ali’s parents have made sure that they won’t let her condition slow her down, and on countless occasions, they’ve praised her for being an inspiration. 

In a recent Instagram post, Leah gushed, “Muscular Dystrophy won’t stop our girl! We always want her to know that if she can dream it, then she can do it! We believe in her like she believes in herself!”

Is muscular dystrophy genetic?

Yes, MD is a genetic disorder and can be inherited from one’s parents. Because of this, Ali’s doctor, Dr. Tsao, wanted Ali’s twin sister Aleeah (aka Gracie) to be checked — but thankfully, she got a great bill of health

“I just got back from Columbus, they said that [Ali] was getting stronger and she was going fine. They actually want to get Gracie tested for MD as well, so I’ll have to take her back up there and they’ll have to do the bloodwork and then we’ll know,” Leah explained. “She’s a child of Corey and I’s, and we carry the gene. She hasn’t been tested. We thought that she had been tested, but I guess that was for some other research. The possibility of her even having it is worrisome to me.”

Later, when Leah learned that her other daughter was not at risk for the disease, she expressed relief — but said she had a feeling that Gracie was healthy. She explained, “I felt pretty confident that she didn’t have it, so I wasn’t too worried about it.”

What treatment options are currently available?

According to Muscular Dystrophy Canada, “Physical and occupational therapy, proper respiratory care, exercise, assistive devices, and orthopedic surgery may help to preserve muscle function and enhance quality of life.”

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