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The true gift of time
Child ambassador gives voice to the special need for support of the nation’s children’s hospitals
By CATHY SALUSTRI
Article published on Wednesday, July 12, 2006 |
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![[Image]](/content_images/071206_fpg-05.jpg) |
| Jesse Mazen is surrounded by family and representatives from the All Children’s Hospital in Washington, D.C. |
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ST. PETERSBURG – Last December Jesse Mazen, 9, needed two surgeries and a procedure that included a sinus operation, a hernia operation and a midline insertion for antibiotics to treat infection.
Under the watchful eye of his doctor and a team of surgeons at All Children’s Hospital, both surgeries and the procedure were done in less than four hours. At a regular hospital, he may have had the surgeries and procedure separately. Jesse’s mother, Leslie, said the decreased time spent in surgery makes all the difference to a child like Jesse.
Jesse has cystic fibrosis, a multi-organ disease that severely affects his lungs as well as his pancreas and other organs. The less time he has to spend under anesthesia, his mom said, the better.
Jesse doesn’t really have the time to spend in a hospital, anyway: he has big plans. This fourth grade student at Cimino Elementary in Valrico has already authored a book, “It’s Easier to Say C-F,” and plans to compete in the Olympics. He loves video games and playing outside with his friends.
Once the time spent for medical treatments is factored, it doesn’t leave Jesse a lot of spare time.
A couple of weeks ago, though, he and his family did take two days out of their schedule to lobby the federal government to help children’s hospitals. Jesse and his family flew to Washington, D.C., for the National Association of Children’s Hospital’s Family Advocacy Day.
A child gets cystic fibrosis when both parents carry mutated C-F genes. The child’s lungs coat with mucus so thick Jesse has to wear a special vest to help shake it loose. Doctors diagnosed Jesse “considerably early,” according to his mom, before he turned 1 month old, and since that time his life has involved medicine – lots of medicine.
“You take a lot of medicines and you have to go to the doctor more than other people,” Jesse said.
He said he wrote “It’s Easier to Say C-F” “so people would know what it’s like.”
Leslie said that Jesse takes 14 medicines every day, a number that won’t likely decrease.
She said they went to D.C. “to explain the uniqueness of a children’s hospital. Fifty-eight percent of the All Children’s population is on Medicaid, which only covers part of medical costs.”
Although the Mazens have health insurance, they know that having a chronically ill child takes a financial toll. Every month they pay $4,600 in insurance co-payments for Jesse’s medicines. They hope that their presence, actions, and words in Washington will help convince legislators to “better appropriate money for children’s hospitals.”
Leslie cites Jesse’s multiple surgeries last year as an example of the superior treatment the staff at All Children’s Hospital has given her son.
“I don’t think that care or service is exhibited at other hospitals,” she said.
Jesse wants to stay healthy so he can one day dive in the Olympics, so he follows doctor’s orders precisely. He knows he needs to eat right to help his still-developing muscles, and he takes special enzymes that help him digest his food. His mom said he takes his 14 daily “horse pills” faithfully.
“He wants to stay healthy,” she said, “because he wants to be an Olympic diver.”
Jesse already can execute back and front flips easily. Jesse’s mom, dad, and two brothers cherish every moment, in the water and out.
“We don’t take things for granted that other people do. When things are good, we just enjoy it as much as we can. And when things are bad, we try to get through it as fast as we can so things can be good again.”
Leslie said that cystic fibrosis is degenerative.
“It doesn’t get better. It just gets worse,” she said.
The average life expectancy for someone with cystic fibrosis is 36 years – so for people like Jesse, who has a lot of plans, every minute All Children’s frees up the more time he can spend pursuing his life’s goals.
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Article published on Wednesday, July 12, 2006
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