Medicaid Matters for Kids Mondays - Maddy

Speak Now for Kids is celebrating Medicaid’s 53rd birthday with blogs highlighting the importance of Medicaid in children’s access to health care. This week we spoke with Maddy’s mom, Ali. Maddy is a Speak Now for Kids Family Advocacy Day alum and current patient at the Cook Children’s Medical Center.

Like her big brother, Alex, Maddy has mitochondrial disease — she also struggles with immune deficiency and disaccharide deficiency. Mitochondrial disease is a serious condition without a cure — it requires lifelong medication and therapy.

Maddy’s medical home is Cook Children’s Medical Center, she’s received extensive intervention there since an early age. Even though my daughter gets tired and struggles with pain, she wants to do the same things as other kids. Maddy's disease causes her to have fatigue, and that impacts what activities we choose to do as a family and how long we can participate in different events. Maddy has been in therapy three times a week for most of her life, she also sees nine doctors on a regular basis.

Because of Maddy’s frequent therapies and treatments, her medical expenses are high. Even with primary insurance, Maddy's copays, therapy bills, and prescriptions cost thousands of dollars a year. She doesn’t have nursing care so I’m responsible for everything she needs, and I don’t get breaks. It’s almost impossible for me to work because of the care that my children require. Fortunately, Maddy is on the waitlist for Medicaid. Once she has Medicaid, Maddy will be eligible for nursing care and other important services to improve her condition.

I understand how important Medicaid is for kids with serious medical conditions, so I want to make sure my members of Congress know that too. I advocate to ensure my kids always have health care coverage regardless of the treatment costs or their pre-existing condition. Every child's life is important and every child deserves appropriate treatment. Speak Now for Kids Family Advocacy Day was an amazing event for us to tell our stories about Alex and Maddy’s health journey. We loved the opportunity to feel like we could make a difference by sharing our story. We also enjoyed sightseeing in Washington D.C. and meeting other families with similar health journeys. 

All parents need to be aware and use their voice to speak to their government representatives. You never know when one of your loved ones will need care, and you don't want health care to be denied based on their condition or lack of insurance. 

Check out Maddy’s original 2018 Speak Now for Kids Family Advocacy Day biography.

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