She’s only 7 years old, but Madi Ramirez has a grown-up-sounding title: MDA Iowa State Goodwill Ambassador.

The honor bestowed by the Muscular Dystrophy Association, or MDA, stretches over the next year and involves dozens of public appearances, all to support the cause of individuals with muscle disorders and their families.

Madi, daughter of Tom and Megan Ramirez of LeClaire, was diagnosed with spinal muscular atrophy, or SMA, when she was nearly 3 years old.

Possessed of an engaging personality, Madi is the youngest of her parents’ three daughters. She was born nine weeks premature, and some of her developmental troubles can be explained by that, her mother said.

At the beginning

Madi was late in starting to crawl, and her mother grew concerned. “She didn’t start crawling until she was about 2 years old, and then she didn’t bear weight easily,” Megan said.

The parents looked for answers and got an initial diagnosis of cerebral palsy. Suspecting it was not that, though, Megan took her baby to an evaluation hosted by the Shriners Hospitals for Children that was held in Moline. Madi was accepted for treatment by the Shriners, and that’s where she was diagnosed with SMA in 2008, when she was 2 1/2 years old.

SMA is a group of genetic diseases of the motor nerves that cause muscle weakness and wasting, or atrophy, which is what happens when the muscles do not work. The motor nerves control muscles used for such activities as breathing, crawling, walking, swallowing, and head and neck movement. The disease is listed as a rare disorder on the website for Families of SMA, a support organization, in the sense that SMA occurs in about eight of every 100,000 live births and affects about one of every 6,000 to 10,000 individuals worldwide.

Persons with SMA are at increased risk for pneumonia and other respiratory infections as well as breathing difficulty during sleep, according to the website.

The prognosis for Madi is pretty positive and she is expected to have a normal life expectancy. But she faces lifelong muscular problems and issues with breathing. She is able to walk now, but uses a wheelchair for various reasons such as getting between classrooms at school.

Madi, a first-grader, and her sisters all attend Cody Elementary School in LeClaire, less than a mile from their home.

Her parents appreciate the school and its staff. “We’ve been blessed with Cody,” Tom said. “We have a great principal, teacher and aide there.”

The other students treat Madi like a star on the bus, Megan said. She can’t go outdoors in chilly weather because of the SMA, so the other children compete to see who can play inside with her at recess.

While the SMA affects Madi’s muscles, it has had no effect in some other ways. She is an active and upbeat little girl.

Daily therapy

Madi goes to the Genesis Pediatric Therapy Group in Bettendorf, where she has a physical therapist and an occupational therapist. A nurse from Trinity Home Health Care is present five days a week. The nurse helps Madi off the school bus every weekday afternoon. She also helps her to bathe and dress, and checks her medical vital signs.

Close attention is paid to Madi’s respiratory system because of the SMA. She is tested daily on a pulse oximeter, a device that determines the percentage of oxygen in her blood. She also uses a device that helps her to cough when necessary.

Her parents discovered that Madi enjoys water exercise, so they have had an in-ground pool built for the girls at their home. Playing in the pool has improved both Madi’s lung capacity and her leg strength.

“She is on a level playing field when she is in the pool,” Tom said. “She is much stronger now.”

Ambassador responsibilities

Madi was treated at the MDA clinic in Iowa City after she was diagnosed in Chicago. The Ramirez family was quickly approached with offers of assistance.

“Someone was right there immediately to talk to us and to connect us with another family in a similar situation,” Megan said.

There is for example, an equipment closet with devices including wheelchairs, special shoes and lifts. The clinic also offers its clients free services such as influenza vaccinations.

“We thought that it was a good thing from the get-go,” Megan said.

The family started slowly in terms of its MDA activism. At first, Megan went to support groups and then they began volunteering once a month or so. They served as Shambassadors in the Shamrocks Against Dystrophy fundraiser that is held on St. Patrick’s Day and attended the MDA Lock-Up fundraisers. They have taken part in Muscle Walks and organized teams to participate with them.

Such activities, Megan explained, have allowed potential donors to see a person such as Madi who is helped by the MDA.

The family applied for the MDA ambassador post and was accepted in January.

Madi’s parents agree that she is doing very well and they feel quite positive about the future.

“The main thing is, for Madi, she has fire inside,” Tom explained. “She is a determined girl and we just guide her ship. She has an inner desire to succeed and she doesn’t like to take ‘no’ for an answer.

“I really think that is part of her success.”

 

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