Medicaid Matters for Kids Month -- Lily H's Story
Throughout the month of March, Speak Now for Kids is celebrating Medicaid Matters for Kids Month with posts highlighting the importance of Medicaid in children’s access to health care.
Lily’s mother, Adele, doesn't like to think about what life would be like without assistance from Medicaid for her 9-year-old daughter’s medical expenses. “I honestly don’t know where we would be without it,” she says. “Would we be homeless? Would Lily be able to receive the care she needs? Medicaid has truly been a lifesaver for our family.”
Complications during Lily’s birth left her without oxygen until she was delivered by emergency caesarian section. Diagnosed with a severe form of cerebral palsy as an infant, Lily has been a patient at Gillette Children’s Specialty Healthcare, located just 20 minutes her family’s home, for most of her life. Lily’s cerebral palsy causes abnormally tight muscle tone, making movement more difficult for Lily than for other children her age. In addition to her cerebral palsy, Lily also experiences seizures.
Comprehensive Care Helps Lily Thrive
Today, Lily is followed by five specialists at Gillette Children’s, including specialists in neurology, orthopedic surgery and pediatric rehabilitation medicine. She receives regular injections of botulinum toxin (Botox) and phenol, along with frequent physical therapy, to relax her muscles. “Before Gillette, movement was difficult – even painful – for Lily,” says Adele. “Now she rolls around and roughhouses with her sister just like any other child.”
Adele credits the coordinated care at Gillette for helping Lily remain healthy and happy despite her complex medical needs. She also credits Medicaid for helping her family remain afloat. “Raising a child with special needs is incredibly expensive. Quite honestly, we wouldn’t be able to handle the expense without Medicaid.” She points out, for example, that Lily’s feeding and medication expenses alone cost more than $1,500 per month.
A Vital Support System
As Lily has grown, additional Gillette Children’s specialists – including spine, dental and seating services – have become part of her care plan. She will soon begin speech therapy, an exciting milestone for her family. They hope an augmentative communication device will open up new possibilities. “We have our little ways of communicating, but expanding that is something we've wanted to do for a long time,” says Adele. “We want Lily to realize her fullest potential.”
Bringing children like Lily to their fullest potential is, Adele firmly believes, what makes Medicaid such an essential service for her family and others in Minnesota. “Like any family, we hope that someday we won’t need Medicaid,” says Adele. “But until that day comes, it is vital us — and more importantly, it is vital to Lily's health — to have that help.”