Margaret Mikol is a mom after my own heart. Even though we’ve never met, I feel like I know a great deal about her. Margaret is the mom of a special needs child. In 1978, her daughter, Julia, was born with a severe combined immunodeficiency, a condition that required a completely sterile environment. Like the “boy in the bubble”, Julia lived at the hospital (and so did Margaret) for years. Like the parents of Katie Beckett, the Mikols quickly exceeded their insurance coverage and had to rely on Medicaid to cover the $350,000 annual price tag. Like Katie Beckett, caring for Julia at home would have been a much less expensive venture, about $50,000 a year, but Medicaid didn’t allow for this. So Margaret fought the bureaucracy, and the Mikols became the first parents in New York to retain the Medicaid coverage (now known as a deeming waiver or a Katie Beckett waiver) to bring their daughter home.

The Mikols were featured in a June 4 article in Time Magazine. Here’s how I know Margaret and I are kindred spirits:

"The process transformed my personality," says Margaret. "I had been a shy and timid person, and I became brassy and obnoxious. I changed into a beast to protect my child."

Even though I’m fighting it…brassy and obnoxious is not a far leap for me at this point. Broken systems, egotistical and myopic bureaucrats and people who truly don’t care the first thing about our disabled children but are only out to protect their turf…well that would make anyone brassy and obnoxious.

The Mikols did bring Julia home for five years, where she lived a much more “normal” existence. At age 8, Julia declined to have a heart-lung transplant because of the level of hospitalization required. And she eventually died. But Margaret, forever changed, vowed to Julia and herself that she would help other families and their children, and SKIP (Sick Kids Need Involved People) was formed.

This organization has helped over 7,000 families with hospital and insurance issues, school issues and counseling parents on what healthy siblings of sick children need.

What I gathered from the Time Magazine article is that Margaret doesn’t think of herself as an uncommon hero or as someone who has done something that others wouldn’t do. And I understand that. Margaret fought the system for what her daughter needed when her daughter wasn’t able to fight. Who wouldn’t do that? She saw first hand how broken things were, how hard parents struggle for services and help and how damaging this was to children and families. To ride quietly off into obscurity after that battle would, to me, seem less natural than doing exactly what Margaret and her husband, Yves have done, make the mission of SKIP their life’s work.

She knew too much to not do what she’s done. Thanks Margaret for doing what a Mom’s gotta do!
What Happened to Katie Beckett?

Here's more information on medical home waivers by state.