Wednesday, June 27, 2007
A while ago I told you about the series they run on ESPN where they Make a Wish for someone with their favorite athlete.
They had one on yesterday with a kid meeting his hero, David Ortiz.
Joe and I were watching it while I was making him dinner. I was trying to explain to him what it was all about and he looked at me funny 'cause I was crying as I was talking.
I reminded Joe that you met Big Papi when he was on the Twins. He gave you a bat that I had signed last year when he visited XM. He gave the kid in the ESPN Make A Wish story a bat too.
Here is a wonderul article about a girl who has FA and raises money so other kids can have their wishes granted. She is a Super Hero!
Helping make WISHES
Friday, June 22, 2007
By Stu Woo
Journal Staff Writer
WARWICK hen she was 6 years old, Meaghan Spillane sat in the living room of her parents’ quaint, one-story house and wished for a trip to Disney World.
“She wanted to meet the princesses,” her mother, Patricia, said.
Two representatives of the Make-A-Wish Foundation nodded and smiled, and a few months later, Meaghan, who was suffering from a rare genetic disorder, was off to Florida with her parents.
Seven years later, Meaghan doesn’t really remember the trip or even making the wish. There were some princesses and a parade, she said, but the specifics are hazy. What she remembers clearly is the feeling of exhilaration she felt the entire week.
The feeling was so powerful that Meaghan decided she had to give back to Make-A-Wish.
So last summer she sent letters to, and visited, more than 200 businesses and individuals — all by herself — and raised $3,100 for the charity.
“I was surprised — she’s usually pretty shy. She approached people by herself,” said her father, Steven. “I just drove.”
For her efforts, she was named Rhode Island’s top middle-school volunteer by the Prudential Spirit of Community Awards earlier this year. Last month, she attended a ceremony in Washington, D.C., where football star Peyton Manning congratulated her and 101 other top youth volunteers from around the nation.
But Meaghan, now a healthy 13-year-old, is not done with philanthropy. Though she is busy with friends and preparing to enter Pilgrim High School this fall (but only after reading the new Harry Potter book), she’s recruited her friends for another round of fundraising this summer.
“I just really wanted to give back to them because they helped me when I was little,” she said. “I wanted to help another kid so they can experience what I experienced.”
“I want to raise more money than last year,” she said.
Those close to her have no doubt she’ll do just that.
“She’s a great salesperson,” said Diana L. Hackney, president and chief executive of the state’s Make-A-Wish chapter. Her personal story, Hackney added, makes her irresistible to potential donors.
“How can you say no?” she asked.
IT WAS ACTUALLY during a previous trip to Disney World, when Meaghan was 4, that her parents first realized something was wrong.
Meaghan, an only child, was getting out of the pool when her parents noticed bruises all over her body. When the Spillanes returned home, they took her to her family physician, who referred them to Hasbro Children’s Hospital, in Providence. There, noted pediatrician Dr. Edwin N. Forman saw Meaghan. The family knew something was wrong when Forman walked into the waiting room trailed by a team of doctors.
Forman told them Meaghan had Fanconi anemia, a life-threatening genetic disorder.
“I was devastated,” said Steven, Meaghan’s father. “To tell your 4-year-old daughter that she’s sick and that there’s no cure . . . ”
Forman, who still treats Meaghan, said Fanconi anemia is rare. Both parents must carry the gene, and even so, there is only a one-in-four chance that a mother will give birth to a child with the disease.
It can be life-threatening. The main problem Fanconi anemia sufferers have is that they can develop aplastic anemia, which occurs 90 percent of the time, or leukemia, which occurs 12 percent of the time. Both are potentially fatal but can be cured by bone-marrow transplants; but bone marrow transplants would be a last resort, Forman said.
“You’re living on thin ice that might break, or under the sword of Damocles, as they say,” Forman said.
Fanconi anemia sufferers also have a much lower white-blood cell, hemoglobin and platelet count than that of a healthy person, which makes them much more susceptible to spontaneous hemorrhaging and bruising, Forman said. As a result, Meaghan had to be careful on the playground and couldn’t play contact sports.
“I work for Chuck E. Cheese’s, and to see all those kids running around and to see kids doing what she can’t do” is heartbreaking, Steven said.
Patricia quit working full time to take Meaghan on her frequent trips to the hospital. But over the next few years, Meaghan’s blood count began rising for no explicable reason, Forman said. For example, in her last checkup — now required only every three months — she had a platelet count of 120,000 per cubic millimeter — twice as high as it had been five or six years ago. (A normal platelet count is 150,000 per cubic millimeter.) Her white-blood cell and hemoglobin count have been approaching normal, too. Though those numbers could fall any time, Forman is confident they will stay up. She is still in some danger of aplastic anemia or a cancer developing, he added, but she also has a reasonable chance of having a normal lifespan.
Meaghan said she has never been worried.
“I have never been afraid of it,” she said.
Meaghan is able to do everything a 13-year-old can do, except play contact sports. She has found an outlet for her energy in dance. She dances a couple of times a week, and earlier this month she showed off her moves at her dance school’s annual concert. Her parents beamed as she bounced and swayed to music from Mary Poppins, Copacabana and Hairspray.
“I can throw all my energy into it,” Meaghan said. “It’s just really fun.”
FORMAN didn’t know that Meaghan had been honored for her volunteer work, but he wasn’t surprised.
“You might say she’s unlucky to have this condition,” he said, “but she’s lucky to have these parents.” And about her volunteer work, he added: “Sometimes a challenge stimulates a person to rise above it and persevere.”