Meet Lucia: 2018 Family Advocacy Day Champion

Lucia is participating at 2018 Speak Now for Kids Family Advocacy Day from June 26-27 in Washington, D.C. During the event, Lucia will share information about her health journey and the importance of children’s health care with members of Congress. Below is her story.

Lucia, aka Lucy, is a bright and social 5-year-old girl with a natural love for learning. She is eagerly awaiting her kindergarten debut — she’ll attend her neighborhood elementary school five days a week starting next year!

Lucy’s kindergarten experience is sure to be the amazing adventure it is for all kids, but her school days will be a bit unique, as she’ll do it all with a private-duty nurse by her side. 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.

Lucy needs nursing care 24 hours a day, seven days a week. She appeared healthy at birth, but began showing signs of distress when, at 8 weeks old, she stopped eating. Things moved quickly from there; before she was even 6 months old, Lucy had undergone four surgeries to place a feeding tube, perform a stomach wrap, conduct a muscle biopsy and insert a tracheotomy.

Very little is known about this rare and serious disease. Lucy’s older brother, Vincent, was just 6 months old when he passed away from what doctors now know was EMARDD. The disease has left Lucy with low muscle tone and in need of her feeding tube to eat and a ventilator to breathe. Lucy’s family has searched for medical answers, struggled for resources to cover medical bills, and lived every day focused on keeping their daughter alive.

Thankfully, Lucy has found a medical home in the Chronic-Complex Clinic at St. Joseph's Children's Hospital. The clinic coordinates all aspects of her highly specialized care. She has also gotten the health care coverage she needs through Medicaid. While her family has private coverage, Medicaid is there to support Lucy when that coverage isn’t enough.

As she looks forward to starting school, this future scholar currently spends her free time enjoying puzzles, her iPad and bath time. She also delights in spending time with her mom, dad and little brother.

Join us in welcoming Lucia to 2018 Family Advocacy Day!