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Diver, 9, is also a D.C. lobbyist

Jesse Mazen has cystic fibrosis but his determination and maturity are impressive.

By ROBBYN MITCHELL
Published June 18, 2006

The job of Washington lobbyists is generally reserved for people older than 9, but Jesse Mazen is ready for the challenge.

The Valrico boy, who has cystic fibrosis, traveled with his family to the nation's capital this week to speak on behalf of All Children's Hospital at the National Association of Children's Hospitals Family Advocacy Day.

Jesse was called upon to serve as the hospital's representative by Ann Miller, the hospital's media relations manager, who has a history with the family after choosing Jesse as the hospital's spokesperson for 2005.

She first met Jesse after one of his teachers showed her a 15-page book he had written for class called It's Easier to say C-F. The book was dedicated to his doctors, and his teachers thought the hospital should know.

"He's very mature - and that's what I've seen from a lot of the children who have chronic illnesses," Miller said. "He's just a kid who sets goals for himself and won't let anything stand in his way."

According to the Cystic Fibrosis Foundation, CF is a genetic disease that blocks normal salt transfer in the body and creates a thick mucus in the organs. The mucus can block passages and cause breathing, digestion and growth problems.

Dr. Magdalen Gondor, who works regularly with Jesse, describes a normal day for him as beginning with a pill regimen filled with antibiotics, a nebulizer and respiratory therapy medicines. Mid-day he will use albuterol to help him breathe, especially before swimming and diving, and in the evening it's back to the pill regimen and a series of puffers. His opening and closing pills for the day do not include the medication he must take before every meal to aid digestion because his pancreas doesn't function properly.

But none of that is stopping him from chasing his dream of becoming the first Olympic diver with cystic fibrosis.

His mother, Leslie Mazen, said he practices every chance he gets and stresses that All Children's Hospital is a part of the reason that he functions like other children.

"The doctors all talk to each other and when he needed multiple surgeries the doctors decided to do them at the same time," she said.

Because using anesthesia on a child is dangerous, Leslie said, having the surgeons tag team instead of having separate surgeries was relief for her - and Jesse.

He has nothing but good things to say about All Children's, even though it's a commute from his Hillsborough neighborhood.

"They take you right away and they tell you everything they're about to do," Jesse said of his surgeries.

Dr. Gondor said Jesse is an energetic and happy little boy who lives life to the fullest.

"His family is very committed and extremely adherent to the different therapies that he needs," Gondor said.

Of the 140 pediatric cystic fibrosis patients in the Tampa Bay Area, Jesse stands out because of his family's dedication and his ability to dive competitively, Gondor said.

"It has led him to be able to achieve much more than your average patient," he added.

The soon-to-be fourth-grader is looking forward to seeing the Lincoln Memorial and the U.S. Mint headquarters on his trip, which the family decided to extend through Tuesday.

A high maintenance family, as Leslie calls it, because of Jesse's condition and her eldest son's autism, the Mazens will be united with representatives from 17 other hospitals nationwide.

"They are going to be there to communicate what these children's hospitals do for them and how the government must continue funding to these institutions for the sake of the patients," Miller said.

Before he left for his trip, Jesse said he wasn't quite sure what he was going to say.

With changes and reform in Medicaid, which covers a lot of All Children's patients, Tampa Bay's grade-school lobbyist could have his work cut out for him.

[Last modified June 18, 2006, 07:36:07]