Aliannah Messer, the young daughter of Leah Messer, star of Teen Mom 2, has been struggling with a form of muscular dystrophy called Titin’s muscular dystrophy — a genetic disease that causes progressive weakness and loss of muscle mass — which is incredibly uncommon in children. Leah has had to watch her daughter slowly deteriorate right before her eyes, and has been sharing her emotional and inspiring journey with her fans since the day she found out about her daughter’s affliction.
Last August, Leah broke down over her daughter’s battle with the disease on the reunion special, explaining how her daughter “continues to get weaker” and will “probably” need home care one day.
“The hardest part is her physically deteriorating and knowing these things are happening to her,” Messer 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.”
Leah’s breakdown spurred a reaction from a specialist who has never treated the Teen Mom 2 child before. Jill Frauenheim, MS, CGC, a Genetic Counselor at Ann & Robert H. Lurie Children’s Hospital of Chicago, reached out to Radar Online and explained how Limb-Girdle Muscular Dystrophy with a Titin Gene Mutation often causes “weakness of muscles.”
“The weakness starts in areas closest to the shoulders, upper arms, hips and thighs,” Frauenheim told Radar Online. “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.”
Frauenheim also explained that while respiratory issues occur because of weakness of diaphragm muscles, which Ali suffered from throughout the season, patients could have heart issues as well. “Heart problems and muscle weakness are the two major symptoms,” she explained.
Although Leah initially feared that Ali’s MD issues came from her being “squished in the womb,” Frauenheim said that it was unlikely that she developed issues from being a twin, or from any sort of trauma that Leah might have endured during pregnancy.
“With genetic conditions, alcohol, drug, injury, restriction of movement, that does not affect the baby,” she explained. “It’s in no way to her being a twin and squished.”
For fans who have been following Ali’s story, in April of 2018, Leah shared a devastating post on Twitter after having to answer a heartbreaking question from her daughter.
“As I’m doing Ali girls makeup she looks at me and says. “Mom, what’s it like to see with two eyes?” Messer shared on Twitter about her 8-year-old daughter. “Everyday I wish I could take her place but I know there’s a greater purpose!” She added: “Just broke my heart.”
Ali has struggled for most of her life with health issues. On top of having allergies and asthma, which constricts her airway and makes it harder for her to breathe, Ali has had quite a few falls at school, has concerned teachers about leaving Ali without supervision. “She had mentioned to us that she hadn’t been eating at school and that she was falling a lot,” Leah said during a 2017 episode. “She needs somebody with her, by her side, at all times.”
“I’m fighting for Ali — I’m going to do everything that she needs done,” she continued. “We wanted her to be independent, and at the same time things are becoming progressive.”
Despite the issues that Ali will face throughout her life, Frauenheim says that life expectancy with the condition depends on the severity, and that some MD patients live well into their 50s and 60s.
“We’ve seen people live into their 50s or 60s, with others into their 20s,” Frauenheim explained. “It comes down to how severe or mild that person is presenting.”
Tune in on Mondays at 9/8c on MTV to continue following Ali and Leah’s story on Teen Mom 2. Catch a brand new episode tonight at 8 p.m., with four previous episodes preceding the newest, for fans that need to catch up.