Mia Wilson, the New Franklin girl who has defied medical odds her entire life, is in Washington, D.C., this week so her story can be heard by the nation’s lawmakers.
Mia, now 14, wasn’t expected to survive her birth because of a rare heart condition called Ebstein’s anomaly. In her case, doctors told her parents she had a 10% chance of survival and to prepare for the worst.
She spent her first 11 months in the hospital and now takes 40 medications a day. Her life has been a constant battle with medical issues, surgeries and maintaining her health.
Through Mia’s struggles, her mother, Wendy Wilson, said she is a happy, friendly child. She loves hanging out with her sisters, jumping on the trampoline and attending concerts, her mother said.
Mia and her family are continually confronting new medical issues, Wilson said.
“We have gotten a few little hiccups over the past months with her kidneys and her liver,” she said June 5. “She has a liver biopsy coming up. Other than that, she is cheerful, happy Mia.”
Medications alone cost $5,000 to $6,000 a month for Mia Wilson
Mia flew to Washington on June 10 with her father and representatives from University Hospitals Rainbow Babies & Children’s Hospital in Cleveland to advocate for better programs to help her family and others who need assistance with staggering medical costs.
In Mia’s case, her mother said her medications alone cost $5,000 to $6,000 a month.
For years, the Wilson family was unable to change insurers and shouldered overwhelming costs.
At one point, they discussed the possibility of having to sell their home.
“There were years that people from our church helped us…” she said. “(They) made our house payment for us because we couldn’t.”
The role of Medicaid for children with complex medical needs
The family found it necessary to seek other help, which eventually came from Medicaid, she said.
“A little over a year ago, (we were) able to get Medicaid through the waiver program,” she said. “… (For) children with complex medical needs, it’s really important.”
Mia’s mother and two sisters — AnnaMay, 17, and Ella, 15 — drove to join Mia and her father in the nation’s capital on June 11.
The Wilson family is taking part in the Children’s Hospital Association’s 20th Annual Family Advocacy Day. This year, parents of patients from about 60 children’s hospitals are participating, urging lawmakers to protect children’s care and support the doctors and nurses who serve them.
‘My child’s alive because of something (a) doctor invented’
During her visit, Mia has meetings scheduled with several U.S. representatives from Northeast Ohio and the state’s two senators, Bernie Moreno and Jon Husted.
“Kids like Mia truly would not be here today without research and funding,” Wendy Wilson said. “… My child’s alive because of something (a) doctor invented.”
Wilson said Mia received a cochlear implant when she was 2 and developed a passion for music. Her current favorite is contemporary Christian singer Phil Wickham.
“There’s the medical side and then there’s the 14-year-old kid side (of Mia),” Wilson said. “… (She’s) happy, spunky and ornery.”
Leave a message for Alan Ashworth at 330-996-3859 or email him at aashworth@gannett.com. Follow him on Twitter at @newsalanbeaconj or Facebook at www.facebook.com/alan.newsman.
This article originally appeared on Akron Beacon Journal: New Franklin girl who wasn’t expected to survive birth shares her story in Washington
Reporting by Alan Ashworth, Akron Beacon Journal / Akron Beacon Journal
USA TODAY Network via Reuters Connect
