Updated: Feb 18
At the end of next month, Megan will travel to Washington D.C. to represent the CMD community and advocate for congenital muscular dystrophy on Capitol Hill. Her voice, and yours are vitally important to maintain funding dedicated to research and care. We are grateful to Megan and her family for sharing their story.
As a parent of a child, Lillian (age 6), with a form of Congenital Muscular Dystrophy (CMD), I have a vested interest in federal legislative issues that affect research funding, Medicaid, and support for rare diseases.
Life has been challenging raising our child with a disability. We struggled for years to find a diagnosis, which ultimately ended up being one that, via recently-funded NIH research, had only been discovered a short time prior. Next came all the medical bills involved in genetic and medical testing to find a diagnosis and then additional expenses for the medical care she would need to treat her array of co-existing conditions associated to her CMD diagnosis. At one point the we were on the verge of making the heart wrenching choice of medical bankruptcy or selling our home in order to pay medical bills. This is a choice no family should have to make. During this same period, we were placed on the waiting list for our state’s (Iowa) Health and Disability Waiver, which also included Medicaid. The 26 month wait time was agonizing. The stress level during this time was compounded by making medical decisions based on financial resources, as well as the day to day impact of medical bills on quality of life.
With Medicaid uncertainty a hot topic in the federal legislature, I would hope that advocating for families like ours to our state’s federal legislative officials could have an impact on the decisions they make.
Budget cuts to Medicaid and NIH funding would have a devastating impact on the CMD community, as well as life changing consequences for affected families - U.S. tax-paying citizens.
Our life in special needs parenting has included: multiple therapies per week, five pieces of respiratory equipment in our home, a wheelchair, VERY frequent visits to roughly 6-8 specialists, hospital admissions, Individualized Education Plan (IEP) in the school system, navigating a complex and overwhelming state/federally funded assistance program, and advocacy efforts daily/weekly/monthly. None of this touches on the emotional and intangible day to day challenges every special needs parent goes through.
I look forward to being a part of Rare Disease Week on Capitol Hill not only to advocate, but also to network with other rare disease and CMD community members sharing their testimonies. It is remarkable to learn that someone else knows exactly what you are going through and has walked in your shoes.
Additionally, the same message being shared broadly by strength in numbers is vastly empowering!