Posted Friday, September 30, 2022.

Huntington Resident Jill Millington, who was diagnosed with Limb Girdle Muscular Dystrophy 14 years ago, and her family are presented a proclamation by Mayor Richard Strick on Friday afternoon at the Huntington City Building.

HUNTINGTON – Huntington resident Jill Millington found out she had an incurable disease when she was 22 years old.

“Soon after having my second child, I noticed I couldn’t lift my leg to step up onto a curb, so my mom asked me if we could go get me checked out. I agreed,” she said. She compares it to what it would be like to try to walk up a hill with weights attached to your ankles.

The diagnosis was Limb Girdle Muscular Dystrophy, a rare, progressive and hereditary neuromuscular disease for which there is no known treatment or cure. LGMD is a group of rare conditions that cause weakness and wasting of the muscles in the arms and legs, and symptoms can appear at any age.

Jill’s illness progressed slowly at first, although the rate of progression varies from one person to the next. Now, the 36-year-old mother of three uses a wheelchair and finds it increasingly challenging to adapt to the difficulties that people with advanced cases of LGMD face on a daily basis

“My disease seemed to be moving at a slow pace until I was 30 years old,” she said. “Then, I had to have surgery and my weakness became a lot worse after that. My arms became a lot weaker to where I struggled to lift even a gallon of milk. My legs got so weak, I started to have a lot more falls while walking, even using a mobility aid such as a cane.”

A fall in 2021 left Jill with a broken leg that took nine months to fully heal. She has not been able to walk since.

She doesn’t share her story for herself or to gain sympathy. Instead, she hopes to make a difference for others who experience life-changing disabilities.

A key part of that is raising awareness about wheelchair accessibility. Jill says that community members can help in a number of ways. For instance, if you see someone with a disability struggling with a door, kindly approach them and ask if they’d like assistance – but don’t just do it for them, she says.

She also urges parents to give young children a chance to ask someone with a disability questions about their condition. That encourages interaction and understanding, rather than telling a child not to stare, which can come across as “do not engage.”

Business owners can also help in small but meaningful ways, Jill says.

“If someone with a disability comes into your store, pay attention to if there is anything they struggle with while they are there,” she said. “Then, adapt and change what you can to make their next visit important.”

Another big challenge without easy solutions is daily transportation. Wheelchair accessible vehicles are cost-prohibitive and unfeasible for most people who have mobility disabilities. Public transportation services like Huntington Area Transportation, where Jill works as a dispatcher, provide as much assistance as they are able. Yet, gaps remain.

“I really wish there was a lot more help out there on figuring out someone’s vehicle situation,” she said.

By talking about her experiences, Jill hopes that others diagnosed with LGMD can find hope and comfort. She says there are too many children and teenagers who, upon finding out they have an incurable illness, can lose hope or fall into depression.

The LGMD Awareness Foundation is an advocacy organization dedicated to raising global awareness in order to boost research efforts that may advance treatment options and, one day, find a cure. Through increased public awareness, people living with progressively debilitating conditions can access diagnosis, supportive care and other helpful resources more easily.

To this end, Limb Girdle Muscular Dystrophy Awareness Day is globally recognized every year on September 30. Mayor Richard Strick signed a proclamation Friday afternoon echoing the awareness day’s cause throughout the City of Huntington.

For more information or to support the LGMD Awareness Foundation’s advocacy efforts with a monetary donation, visit lgmd-info.org.