|Dr. Jonathan Ellen (center) with Aiden Hawk (right) and the Hawk Family
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Government officials from the city, region, state and nation arrived at All Children's Hospital on Friday morning for the annual Legislative Breakfast. They had a chance to see the hospital in action first hand, touring the Simulation Lab and the Cardiac Center and hearing directly from President and Physician-in-Chief Jonathan Ellen.
But the star of the show was a 10-year-old boy who has become part of the ACH family and whose moving story riveted a packed auditorium.
Aiden Hawk, joined by his parents and younger brother, read from hand-written comments on several small notebook pages about his challenging journey that began with a complex, life-threatening duct and gall bladder condition called biliary atresia.
Then came a liver transplant at just eight months of age, followed by severe problems stemming from post-transplant medications and a rare condition called dysautonomia -- a malfunction of the autonomic nervous system that controls functions such as heart rate and blood pressure
But the road has taken a remarkable turn for the better for Aiden in the past year.
"I love baseball and riding my bike," he said into a microphone before the large gathering inside the Occupational Care Center. "I was born with a rare disease and have been sick. But I am feeling better this year. I want to be an engineer when I grow up."
Without dedicated and cutting-edge care he received at All Children's over the years, Aiden's prospects of growing up were bleak. He has made countless stays at the hospital, while also receiving vital treatment from the transplant program at Cincinnati Children's Hospital.
"They have been fantastic about allowing the family to have all their care provided at All Children's, while still having a connection to Cincinnati Children's," Dr. Ellen told the legislators in the room before introducing Aiden and his family. "So that is a family-centered care kind of model."
As Dr. Ellen noted, the existence of All Children's has made it possible for the Hawks to stay in their St. Petersburg home. They haven't had to uproot the entire family and disrupt their lives for Aiden to continue his care in Ohio - just as he's beginning to thrive in school and finally savor becoming an active little kid.
That's just one of the reasons his parents, Lisa and Joey Hawk, are so grateful for the care Aiden has received at All Children's since Aiden's birth in 2002. After his 6-year-old brother, Mason, led the crowd in the Pledge of Allegiance, Lisa provided a powerful account of what Aiden and their family have endured ¬- and the critical role ACH has played.
"Children who are born with biliary atresia without intervention don't live past two years of age," she said. "And you can see, Aiden is almost 11. The intervention has been here. At six weeks of age, he was immediately given a life-saving surgery which gave him an opportunity to grow and become healthier for his actual liver transplant. And it didn't end there. ...
"Unfortunately, Aiden had a problem with some of the drugs to help him and save his life - they actually altered the way his neurological system works. So Aiden struggled. And it was an unusual and awful few years - he spent hundreds and hundreds of days in the hospital."
The secondary condition required frequent ambulance trips to the hospital, fortunately only three miles from their home.
"If it wasn't for having All Children's here, and having this opportunity, I know for a fact that we wouldn't have this little boy about to turn 11," she added. "It is a true, honest-to-God statement. There are people here I think of us as family. And we are incredibly grateful for that."
After years of trying to find the right treatment for Aiden, a breakthrough finally occurred last year.
"Multiple doctors from all over the country have communicated so we could continue to stay here," she explained. "And we're very excited that, as of last year, we have an endocrine team here that identified an effective treatment ... and it completely changed his life.
Lisa described how Aiden went from a child who "every morning was taking anti-nausea drugs, not being able to get up, unable to attend school fulltime, unable to play outside, unable to sweat, unable to continue to play on his baseball team" to a new lease on life.
She remembers how the call from the doctor came in on a Sunday, suggesting that they try something different.
"I thought, 'Gosh, they're calling me on a Sunday and telling me to try this - maybe this is it after years and years of seeking,' " Lisa recalled. "So we gave him this drug and the next morning he woke up and said, 'I feel awesome!' And he's never said that."
The new drug continues to work wonders. Aiden was only admitted to All Children's once in 2012.
"That's never happened in his life," Lisa said. "He's never gone longer than three months without some kind of crisis. He's attended school full time for the first time ever this year. He's a straight-A student. He's in the gifted program. He's a hard worker. He's amazing - he played baseball and finished out the whole season without missing one game.
Her words couldn't have made more of an impact on those in attendance.
"Anybody who's here to listen and advocate for children like ours, these children would not be here and I would not be the mother of this child if it wasn't for people continually fighting and advocating for children who are just a little outside the box," she said. "And I really appreciate that."
Minutes later, Aiden's dad spoke about the extreme financial stress that hits families in such major medical ordeals - even those who have insurance, as the Hawks do.
"It's very, very difficult and changes your life," he said. "We rely on SSI (Supplemental Security Income), which allows us to have Medicaid. If we did not have Medicaid, we would not be able to function and survive. I work for the state and have good insurance, but without that Medicaid, who knows where we would be?"
Aiden, following his parents' stirring lead, even took the opportunity to play the role of lobbyist in his closing remark.
"Please vote to help children like me who need children's hospitals. Thank you."
With that, the room erupted in applause for the little boy who has come so far - with the help of a hospital that has helped him get there.