'Fighter' kid battles medical problems with a smile
Published: August 31, 2012
People had tears in their eyes.
For the little boy, Edwin Diaz, the tune was more than just a song. His grandpa, James Acevedo, remembers how he would turn it on in the car every day on the way to school.
This year, as golfers tee off for the second Josh Jetton tournament, organizer and Jetton's brother, Daniel Baker, is hoping and praying that Edwin will be well enough to sing again for the crowd that will be gathered for another special fundraiser.
The proceeds will help the family of the 7-year-old who has fought to stay alive against all odds from the time he was born, and is right now in a hospital battling another crisis.
Edwin was born with Megacystis Microcolon Intestinal Hypoperistalsis Syndrome.
Behind the long name is a rare condition that prevents the stomach, intestines, kidneys and the bladder from functioning correctly.
Within 45 minutes of being born, doctors flew him to Tampa General Hospital.
He had his first surgery for an enlarged bladder when he was 3 weeks old.
About two months later, doctors broke the news to the family: Edwin would need a multiple organ transplant.
When he was 15 months old, doctors gave him not one or two, but eight new organs.
Edwin had a new lease on life, but the journey ahead was long and tough.
For mother Crystal Acevedo, the bravest person she knows is her "fighter" whose tenacity does not surprise her.
"He's determined to prove something to somebody," she said, like two years ago when they almost lost him from a bout of swine flu.
Since his immune system has become weak, an infection has the potential of becoming deadly, said James Acevedo.
It almost did.
Family friend Linda Johnson described it as "one of the hardest hospitalizations he and his family had to go through."
Edwin pulled through and came home the day before Christmas that year.
For two years he did well. He tried to live as normal a life as he could. He went to school at Fred Wild Elementary and did what little boys do, until severe pain sent him back to the hospital this June.
Turns out, his body was rejecting his intestines.
He spent his seventh birthday on a hospital bed, taking strong doses of anti-rejection medications.
He was back at home for 10 days, James Acevedo said, but went right back.
Doctors are giving him steroids for 10 days and Tuesday a scope will reveal if his rejection has been reversed.
"If the rejection is gone, all is well and God is good," said James Acevedo.
Baker, who knows the family, said three level sponsorships are available: For $50, donors can get a sign; two for $100. A $250 sponsorship comes with two different signs and pays for four people to play.
The cost is $40 a player and includes doughnuts and lunch. The tournament will be held Sept. 22 at the Spring Lake Golf Resort. Registration is at 8 a.m., followed by tee-off at 8:30 a.m.
Baker said they could easily accommodate 80 more sign-ups.
Edwin's almost three-month stay at the hospital has created financial hardships for the family, he said.
The single mother of three, who works at the Moose Lodge, had to take a leave of absence for two months to be with her son and is now only working two to three days a week.
"I do pay rent, I do have a car payment," she said. "It was hard being caught up."
The proceeds raised will help her with some of that, Baker said.
"We are going to pay her Progress Energy bill for up to six months," he said. The rest will go toward her car payment and rent and Walmart gift cards for groceries and essentials, he added.
The grandson who is always smiling and happy does have moments when he wonders why him.
"I got no answer," Jimmy Acevedo said.
"If I could take the pain I would take it for you'" is all he can say.
For more information, call Baker at (863) 273-9536 or Tameesha Hudson at (863) 669-8227.
Spring Lake Golf Resort is at 100 Clubhouse Lane, Sebring. Their phone number is 655-0101.
If you want to go:
WHAT: 2nd annual Josh Jetton Memorial Golf Tournament
WHEN: Sept. 2 at Spring Lake Golf Resort
Cost: $40 a person, plus sponsorship opportunities
For more information, call Daniel Baker at (863) 273-9536 or Tameesha Hudson at (863) 669-8227
email@example.com (863) 386-5831