Meet Maliyah: 2020 Family Advocacy Week Champion

Maliyah is participating in Speak Now for Kids Family Advocacy Week from August 10-14, 2020. Through this special event, Maliyah and her family will share information about her health journey, Mt. Washington Pediatric Hospital’s role in providing Maliyah with necessary health care services, and why the public and our elected officials must invest in the future of kids like Maliyah.

As an infant, Maliyah was diagnosed with Coffin-Siris syndrome, a rare genetic syndrome that affects several systems in the body.

“It was imperative that she received care at the children's hospital,” says Martina, Maliyah’s mother. “The training we received on the trach vent, g-tube and other emergency management was priceless.”

Additionally, the specialists at Mt. Washington Pediatric Hospital in Baltimore were able to provide care not available at a general hospital.

Since birth, Maliyah has needed a lung/breathing tube, ventilator (on and off), feeding and other respiratory care as well as learning and speech therapy, tracheotomy education and training, physical and occupational therapy, and complex primary care.

“When she was diagnosed, we were concerned about how we would provide care for our daughter,” says Martina. “We were not sure if we would be able to afford her care.”

With both parents working, Medicaid covers the cost of care for Maliyah’s treatment. However, the system requires constant approval to complete various forms of care.

As a 1 year old, Maliyah was denied the RSV vaccine. In turn, she contracted RSV and was placed on a breathing machine, contributing to a downward slope in her health and developmental delay.

These barriers to care can be disheartening for the families who depend on Medicaid for their child’s care and detrimental to the child’s health.

Today, Maliyah is happy and excited to learn new things. Her favorite activities include swimming and coloring. Maliyah is mostly nonverbal and understands everything but is unable to speak.

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