Meet Rafay: A Cincinnati Children's Hospital Medical Center Champion
Rafay spent almost three months in the NICU and experienced sepsis, along with other medical complications. He was diagnosed with hemolytic uremic syndrome (HUS). “We were told to say our goodbyes twice, but my son beat all the odds,” says Hadia, Rafay’s mother.
He ended up being in and out of the hospital with a few relapses due to HUS. He also has low muscle tone and developmental delays, as well as stage 1 chronic kidney disease, hearing loss and is nonverbal.
Center champion, is participating in Family
Advocacy Day 2023.
“It had a major impact on our family in every way possible,” says Hadia. “I had to quit my job to take care of my son since I had to go to the hospital daily for his fresh frozen plasma treatment.”
Rafay also has regular ENT, audiology and nephrology appointments along with occupational, physical and speech therapies. He was deaf within nine months of his diagnosis and had a hearing aid for one year before his cochlear implant surgery. He also faced a six month stay in hematology when he had renal failure.
In the first two and a half years of Rafay’s life, there were regular daily visits to hematology, when the doctors introduced him to a new medication, he started going to the hospital for infusions every 14 days. He still has infusions every eight weeks.
The current treatment plan is the same and Rafay has improved significantly. He took his first steps when he was 4. He uses an iPad as a speaking device.
“He is still an immunocompromised child, but we are able to see specialists every six months instead of every month,” says Hadia. “He has graduated from his wheelchair as well as braces. He is thriving. His labs are only once a month.”
Since Rafay is immunocompromised, the COVID-19 pandemic affected him and his family greatly. “I had to let go of my job again and home school Rafay for two years as he could not attend the school until he was vaccinated.”
Rafay also got his first seizure after he had COVID-19. “We had to call 911,” says Hadia. “It was the scariest moment.”
Hadia and Mohsin, Rafay’s parents, have private insurance coverage as well as Medicaid. Thankfully, the family financial team at Cincinnati Children's Hospital Medical Center (CCHMC) has helped them file the necessary paperwork and information to get costs covered.
“Rafay’s infusion medication was denied by the insurance company as it was not approved for younger kids,” says Hadia. “Thankfully, his hematologist fought with the insurance company for two years until they approved it. The ER visits were also never covered, since they did not think they were necessary, but CCHMC teams filed all the paperwork necessary for the approval.”
Today, Rafay is thriving. He loves watching YouTube videos and Mickey Mouse.