Medicaid Matters for Kids Mondays - Lucy

Speak Now for Kids is celebrating Medicaid Matters for Kids Mondays with posts highlighting the importance of Medicaid in children’s access to health care. This week we spoke with Lucy’s mom, Lisa. Lucy is a Speak now for Kids Family Advocacy Day alum and current patient at St. Joseph’s Children’s Hospital.

My daughter, Lucy, is the only person living in the United States with a diagnosis of EMARDD, or early onset myopathy with areflexia, respiratory distress and dysphagia. Her medical condition has prevented us from doing many things some families may take for granted, such as traveling, bouncy houses and riding a bike. Lucy needs nursing care 24 hours a day, seven days a week. She also sees nine specialists and receives six therapies a week, including occupational therapy, physical therapy and speech. I had to leave my job to make sure Lucy had the care she needed. My husband and I have trouble planning anything for ourselves because a nurse may call out. We are always worried about the safety of our daughter.

We would only have our private insurance if Lucy did not have Medicaid. However, our private insurance maxes out at a certain dollar amount for medical supplies and equipment, which means her life support equipment is not fully covered without Medicaid. Medicaid also covers private duty nursing which takes care of her medical needs. Lucy receive her therapies and medical equipment through Medicaid. Ultimately, she lives and thrives because of the services we receive from Medicaid. Without this program, Lucy’s survival rate would decrease significantly.

I advocate for Medicaid because my daughter may die without this program. I fight to keep it so she can have the chance to live and thrive. Other parents can join me by contacting their local representatives and expressing how important it is for health care to be accessible for kids in need. Isn’t that what we all want for our babies?

This is why our family represented St. Joseph’s Children’s at 2018 Speak Now for Kids Family Advocacy Day. We shared information about Lucy’s health journey and the importance of Medicaid with our members of Congress. We met so many awesome families fighting the same battles and walking the same journey. It was so comforting to know we are not alone. My daughter still talks about our trip and tells anyone who will listen all about it. My favorite moment was when Lucy rolled her wheelchair up to the drummer of the band during the Patriotic Dinner and started playing his drum. He was so sweet and gave her a drum stick. We now have a drum set in our house because she’s been asking for drums ever since!

I’d like for people to know that despite Lucy’s medical condition, she is extremely smart and cognitively on par. Lucy amazes us on a daily basis. She’s a typical 5-year-old that wants to do what all the other kids are doing but understands that she can’t. She makes up for it, though, and has shown us that she can have a very full life with her limitations. She’s going into a mainstream kindergarten class! She’s amazing! 


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