Orlando family advocates for more federal funding to support children’s hospitals

Family of Sebastian Davila, 7, lobby Florida lawmakers

A family’s plea to Florida lawmakers could help provide extra federal funding to support children’s hospitals.

ORLANDO, Fla. – A family’s plea to Florida lawmakers could help provide extra federal funding to support children’s hospitals.

Sebastian Davila, 7, also known to his friends as “Sebby” sat with his parents and siblings inside Nemours Children’s Health for the first time in a while.

“They saved our family, I mean this would’ve been something absolutely devastating,” Liz Davila, Sebastian’s mom said.

Two and a half years ago, just as the world was beginning to feel the effects of COVID-19, Sebastian was experiencing symptoms his mom knew weren’t right. She said he had been experiencing nausea for a while that wasn’t normal, then his balance seemed off and one of his eyes was deviating. Liz Davila took her son to Nemours and doctors ordered a scan.

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“The doctor came in and he had his mask on but he was actually crying, and he said there’s no easy way to say this but your son has a tumor,” Liz Davila said.

Her 5-year-old would need emergency brain surgery to remove the tumor, which was estimated to be about the size of a tangerine. His parents agreed to the surgery but would have to wait to find out if the tumor was cancerous.

“It was definitely the hardest day, but then just two days later, just knowing that we still had a long road ahead of us, but knowing that the doctors were able to take it all out, I can’t even explain that level of relief,” Liz Davila said.

The couple unexpectedly welcomed another baby during the pandemic and said stem cells they collected may one day help her brother make a full recovery.

“It was an all-out effort for our family and so I can’t even imagine other families that are single-parent households that would have to go through something like this and that happens all the time,” Durann Davila, Sebastian’s dad said.

The couple stressed that two years ago they never would have imagined the situation their son was in, and no family is ever ready to hear their child has cancer.

Sebastian went through thirty rounds of radiation and nine rounds of chemotherapy. The Davila family is dedicated to sharing his story of survival through “Speak Now For Kids.”

Liz Davila said they have already met with U.S. Representative Darren Soto, the office of Senator Rick Scott, and Senator Marco Rubio to advocate for federal funding for children’s hospitals.

Now at 7 years old, Sebastian talked about his love of Legos and the Mandalorian.

“He’s got such a great attitude, he’s so strong, and we’re so proud of him,” Durann Davila said.

While Sebastian still has quarterly checkups at Nemours, he has been otherwise healthy and will be attending school next year with his twin brother.