By Adele Harris
I don’t like to think about what life would be like without Medicaid’s assistance for my 9-year-old daughter Lily’s medical expenses. I honestly don’t know where we would be without it. Would we be homeless? Would Lily be able to receive the care she needs?
Complications during Lily’s birth left her without oxygen until she was delivered by emergency caesarian section. It was the scariest day of my life. Lily was diagnosed with a severe form of cerebral palsy as an infant and has received care at Gillette Children’s Specialty Healthcare ever since. We feel so fortunate that Gillette is less than 20 minutes from our White Bear Lake, Minnesota home. Lily’s cerebral palsy causes abnormally tight muscle tone. This makes movement more difficult for Lily than other children her age. Lily also experiences seizures. Thanks to her care at Gillette, those seizures are currently under control.
Today, Lily is followed by five specialists at Gillette, including 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. Now she rolls around and roughhouses with her sister like any other child.
I credit Lily’s coordinated care at Gillette for helping her remain healthy and happy despite her complex medical needs. And I credit Medicaid for helping my 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. Lily’s feeding and medication expenses alone, for example, cost more than $1,500 per month.
As Lily has grown, additional Gillette specialists – including spine, dental and seating services – have become part of her care plan. She will soon begin speech therapy to, hopefully, begin using an augmentative communication device. We have our little ways of communicating, but expanding that is something we've wanted to do for a long time. We want Lily to realize her fullest potential.
Medicaid is, truly, an essential service for my family and countless others in Minnesota. Of course, we hope that someday, we won’t need Medicaid. But until that day comes, it is vital us — and more importantly, it is vital to Lily's health — to have that help.