Community Voices

Woman born with major health issues calls her mother ‘my hero’

Megan Marie, left, and artist Muta Santiago became friends at a Halloween gathering. Painting Megan’s newest wheelchair is the third charitable contribution Santiago has made to customize her mobility devices.
Megan Marie, left, and artist Muta Santiago became friends at a Halloween gathering. Painting Megan’s newest wheelchair is the third charitable contribution Santiago has made to customize her mobility devices. Photo provided to the Miami Herald

“She is my hero,” said Megan Marie of her mom. “I’m so horrible with that date. Every day is Mother’s Day to me.”

Remembering dates is just one of the things Megan overcomes every day. She was born with multiple health issues, she said, as a result of her mother’s exposure to pesticides while pregnant.

“My mom was so careful. She didn’t drink or take any medications, but where we lived they were still using crop sprays. Planes used to fly over the wheat fields near our house,” said Megan, now 36.

The family moved away from Washington state, and Megan, a vivacious straight-A student, did well and had friends, even though she was often sick. She said she got four prom dresses and missed all four proms due to hospitalizations for Crohn’s and immunodeficiency diseases. She couldn’t walk at her high school graduation.

And unfortunately, she got involved with the wrong guy and was a victim of domestic abuse for three years. Her last name is not used in this article. According to the American Psychological Association, disabled women have a 40 percent greater chance of suffering intimate partner violence than women without disabilities.

Megan was left with traumatic brain injury that, combined with her other disabilities, requires her to use a wheelchair.

But none of this has stopped her.

When she moved by herself to Miami for a fresh start, Megan said she didn’t want to go out in her plain wheelchair. And she found it difficult to make friends in her new city.

“I’d make a new friend and we’d meet for coffee and then the next time I’d be in the hospital for some treatment and they would forget about me,” she said. “It was hard. I got depressed.” But then she met the artist Muta Santiago, instagram.com/mutavision.

“One Halloween, I went to Virtue Vape in costume. Muta was the only other person wearing a costume, so we immediately hit it off,” she said. “I thought, ‘Wow, this is my first friend in Miami.’ Friendship takes effort. Muta never forgets about me. We have that friendship connection.”

He volunteered to paint Megan’s wheelchair and the walker she uses at home. Recently, they met up so he could paint her latest, lightweight wheelchair that she can push by herself.

“Kind, generous Muta, who helped me when l knew no one, offered to paint it on his own for me yet again so l can use my wheelchair without shame,” Megan said. “Without Muta, l would not get to experience the freedom this chair offers because l would be too scared and prideful to get in. Muta is a true hero!”

Her big wheels are now bright yellow, and there are lime green and hot pink accents. The smaller wheels are designed with paint splatter, but there’s no blue or purple. “He doesn’t even pack those colors. He knows I’m not a blue or purple person,” she said.

The wheelchair also “matches my personality. I put my pins and streamers on it and people come up to me now and say ‘I like your style.’”

“People are scared to notice someone with a disability. My new wheelchair makes it different, like it’s OK to talk about this. They ask questions about my disability. It’s not taboo anymore,” she said.

She also is “happily unmarried” to a longtime friend who kept in touch and finally moved to Miami to be with her. “We were friends, and then we fell in love,” Megan said. “He’s my life partner.”

“And now with my new wheelchair, even if I’m having a bad day, I don’t need to worry. I can still go out and do life,” she said.

Her mom, a retired teacher, said that when Megan was little she would give away her toys and even try to give away pots and pans to help people shopping at the family’s regular garage sales.

“As a mother it’s very hard to see your child struggle with health issues and of course you want to take them on yourself,” she said. “Part of her thing is you rise above to teach others about your disabilities. She’s all about making people feel comfortable.”

“She doesn’t like me to talk about when she was little, but when she was in fourth grade she went to the farmer’s markets and played her recorder to raise money for a teacher who was sick,” her mom said.

“That’s who she is. She’s always had this big heart.”

Parkinson’s fight honors mom

Five years ago, brother and sister David and Melissa Blechman did something very different to honor their mom, Nancy, who was diagnosed with Parkinson’s disease in 2008 at just 50 years old.

The siblings started the Blechman Foundation, and their nonprofit national organization has raised about $300,000 in early-stage funding for six pilot projects in neuroprotective research that can perhaps delay or avoid PD for those at risk.

Major fundraising takes place each April, National Parkinson’s Awareness Month, and for the past three years the Blechman Foundation has teamed with a MLB baseball player to help increase donations.

This year the challenge was “Strikeout PD!” and the foundation worked with Miami Marlins’ pitcher and strikeout specialist Tom Koehler. Supporters pledged money for every strikeout in April by Koehler. He had 20 and the Blechman Foundation raised more than $20,000.

“We honor our Mom with the Blechman Foundation, but the Foundation’s success is made possible because of the generosity of people who support our effort, like those who contribute to the Foundation’s baseball challenge each April,” David Blechman said in email.

According to the Parkinson’s Disease Foundation, one million people in the United States are living with PD and 60,000 new cases are diagnosed each year. There is no known cure for this disease that destroys brain cells essential for normal movement. Prominent symptoms are shaking or tremors, slow movement, stiffness of muscles or rigidity, and problems with balance and walking.

To learn more about PD research, and to donate to the Blechman Foundation, visit blechmanfoundation.org.

May pops concert

Feel grateful at the “Heroes” concert performed by the Greater Miami Symphonic Band at 8 p.m. May 16 at Gusman Concert Hall, 1314 Miller Dr., Coral Gables. This is the 19th annual May Pops Concert presented by this community band.

Led by Music Director Robert Longfield the group will perform selections including “Summon the Heroes,” “Hymn to the Fallen,” and others. Guest Barry Bernhardt will conduct “Jubilee Overture,” “Pineapple Poll” and “Rhosymedre.” Tickets are $15 adults, $5 students/children over five available at the box office or at gmsb.org.

If you have news for this column, please send it to Christina Mayo at christinammayo@gmail.com.

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