“Without medical services, we’d be nowhere.”
Meet the Martin Family
Amber and John Martin tried to get pregnant for nearly two years, so were elated when they found out they were expecting. During routine prenatal tests, however, the Martins found out that their baby girl had significant health problems, including missing parts of her brain.
Shortly after Ryleigh was born in 2016, she was diagnosed with pyruvate dehydrogenase deficiency, a degenerative mitochondrial disease. She is legally blind, deaf and relies on a feeding tube for nutrition. To care for Ryleigh, the Martins rely on teams of medical support services from occupational and physical therapists to vision and hearing therapists. A night nurse comes to their home, providing Amber and John some respite from caring for their baby 24 hours a day. Funding for these therapies and medical support services comes Early Intervention and Medicaid.
“We love our therapists,” Amber says. “They are experts and know what she needs. By working with them, we’re able to work on her muscle tone and strength. They teach me things to work on every week and that’s why Ryleigh is progressing.”
Ryleigh, who is now 15 months old, has hearing aids and responds to her family’s voices, especially those of her doting older brothers, Drake and Mitchell. “Because of all of the attention and different medical supports she receives,” John says, “She is able to sit up, roll over, and even put her weight on her feet with some assistance.”
“It’s amazing the progress she’s made,” Amber adds, noting that Ryleigh has accomplished far more than her doctors thought possible.
Amber worries about money. Though John has worked full-time at Scott Electric for 11 years, Amber no longer works because of so many medical appointments each week. “I used to work two jobs before this,” Amber says. “Now that I can’t do that, we’re barely making ends meet.”
“These programs and medical assistance have been essential to us,” Amber adds. “In addition to the medical and care services, we’ve connected with other families.” Because Ryleigh’s condition is so rare, most of those families are spread out across the country. Recently, however, they met a family from Cranberry, Pa., with eight-year-old twins whose struggles mirror Ryleigh’s. “It was great to meet them,” Amber explains. “There were so many similarities with Ryleigh. It gave me hope for her future.”