A while ago I told you about the series they run on ESPN where they Make a Wish for someone with their favorite athlete.

It's back.

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.”

Her goal?

“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.”

swoo@projo.com

BACK TO BEING BRIA: 5-year-old puts marrow transplant behind her

'Life's 100% better now'

June 20, 2007

BY AMBER HUNT

FREE PRESS STAFF WRITER

With her shy eyes looking at the floor, Bria Banks didn't smile when given a shiny pink bicycle.

Or when handed a gift bag full of toys.

Or when shown the oversize novelty check promising a free trip to Disney World.

The first thing that got 5-year-old Bria to smile at a luncheon in her honor Thursday was a simple blue balloon, which she batted around as she began to giggle.

She was all smiles after that.

That's when it became clear: Bria, who just six months ago was so sick with aplastic anemia and Fanconi anemia that she would have died without a bone marrow transplant, is a little kid again.

And so is her 7-year-old brother, Brandon -- her marrow donor.

"Life's 100% better now," said Twan Banks, Bria and Brandon's father. "The family's all together."

Last November, Bria went to Cincinnati to get the transplant and spend her recovery time. Her mother, LaTisha Lockett, stayed with her.

Meanwhile, Banks stayed with the couple's two other children -- Brandon and 1-year-old Brielle -- at the home of Lockett's mother in Detroit.

"It was hard having half the family here and half of it there," Banks said.

Bria was given the bike, toys and trip Thursday by the Olympic Steel Co.'s Detroit division.

The company adopted the Bankses as a Make-A-Wish family for the holiday season and bought the gifts with donations that kept spilling in after Christmas.

"It's nice to take time to slow down and remember what's really important in life," said Michael Cedoz, the division's general manager.

But for the Bankses, the adoption went far beyond Christmas. The children's tale -- of an older brother helping save his little sister's life -- touched employees, Cedoz said.

"We got to help and share some of our blessings," he said.

Bria's diagnosis came in September. Both anemias are rare blood disorders that attack the bone marrow.

The transplant was no easy procedure as Bria was allergic to some of the medications and had two seizures.

Doctors had to revive her after she quit breathing. An MRI revealed minor brain damage from the temporary lack of oxygen.

After spending about four months recovering in Cincinnati, Bria came back home to Detroit. She takes medication daily to suppress her immune system so her body won't reject the foreign marrow.

Other than that, her family says, life for Bria is nearly back to normal.

And, after her initial shyness wore off, that's how it appeared Thursday.

Wearing a yellow-and-pink Dora the Explorer outfit -- her head, once bald from chemotherapy, now covered in wispy black hair -- she quietly sat at the luncheon and gobbled down pasta.

But when Brandon and Brielle started batting around those balloons, she slowly got up and joined in. And then she smiled.

"I knew you had it in you," her mother said with a laugh. "Where were you hiding?"

Contact AMBER HUNT at 313-222-2708 or alhunt@freepress.com.

Copyright © 2007 Detroit Free Press Inc.

I just cried for the third time in four days today. I am glad we are going on vacation next week.

On Sunday, we went to Papa Teddy's and that was hard. Then it got even harder as we watched ESPN and they had a segment on a boy whose Make A Wish wish was to be a coach for the day with the Philadelphia Eagles. I had to walk away. I couldn't take it.

Then yesterday, Mommy and Debbie Blum and I went to Children's Hospital in Philadelphia and together with these really nice people from a place called Jacobs Music gave a totally cool piano to the clinic there.

Two of the guys from Jacobs music are brothers who are about to lose their other brother to cancer. That is part of the reason they are helping Hope for Henry Foundation. He is supposed to die any day now.







There was a boy in the music therapy room who was you. I watched him walk unsteadily into the room holding his mom's hand, and saw you walking down the hall in the clinic in Minnesota for the neurologist who wanted to check the neuropathy you had from the steroids and GVH. Or maybe it was after your brain surgery. I can't remember which.

I couldn't take my eyes off this kid. Unfortunately, he was you when you were not in a good mood. And I know that a lot of that bad mood is because of all of the steroids.

His name was Matthew. There were too many people in the room and just too much activity. He seemed okay before we all crowded in. But with all of the commotion he just kept his chin against his chest and stared downward.

It reminded me of when Superman came to visit you in your room at Hackensack. You wanted nothing to do with him. I felt bad on so many levels.





That head of hair definitely looked familiar.



Everyone was very happy about the piano, but I just wanted to take Matthew away from that room and hug him. Luckily, he got off the piano bench after a while and just buried himself against his mom and then he walked off with his dad.

Which takes me to 5 minutes ago when I watched this video about another Matthew. I know Matthew's parents and they are really, really good people. Going through this once is enough. I cannot even imagine. It is interesting to see Dr. MacMillan. I wonder if she is still running. I remember that she runs marathons.

The shot of the Mississippi is right where Jack and I went down and skipped stones. Joe and I did that on Saturday at Seneca Creek Park after we dropped Jack off at Shadowlands.





Matthew Pearl Prepares For Bone Marrow Transplant; Teammates In Eureka Show Their Support

Minneapolis, Minnesota, where the calm of the water is overshadowed by sleepless hours for a St. Louis County family.

The University Of Minnesota Hospital-Fairview is a leader in the fight against Fanconi Anemia, a rare and vicious blood disorder that has left 9 year old Matthew Pearl fighting for his life.

His mother Diane said, "The medicine is like drinking Drano. It kills all the cells, and the cells are so sensitive at your mouth and bottom areas. That's the first place you start getting sore."

To prepare for transplant, Matthew is receiving transfusions which eliminate his immune system. "What's difficult about Fanconi Anemia is they don't repair their DNA well. So if you give them chemotherapy or radiation they can get really sick," according to Dr. Margaret MacMillan of the marrow transplant program in Minnesota. "In general, you give them a fifth of what you give a normal patient."

The side effects are excruciating. The pain is so unbearable at times that not even a mother's touch can make it go away.

This is the second time the Pearl family has undergone this kind of suffering. Daughter Alex underwent a bone marrow transplant for the same disorder five years ago. Her mother said, "Unfortunately, it gets worse before it gets better."

Matthew's father, Mark, is also at his bedside. Fighting back tears, Mark said, "When he's resting comfortably we've had some tremendous father-son time.

While the Pearl family prepares for Friday's bone marrow transplant, Matthew's friends are doing their part to show how much they care about him.

At home in Eureka, Matthew's baseball team skipped practice on Wednesday. Instead, they spent the evening shaving their heads in his honor.

Matthew will likely lose his hair due to chemotherapy and radiation. His teammates figured he shouldn't be bald alone. Of course, that didn't make going under the blade any easier.

Ford Viehman says, "I've been growing it out all summer and now I've got to get rid of it." Eli Schmidt says, "I just got this mohawk about a week ago, and I really don't want to lose it."

But they're prepared to make the necessary sacrifice, in honor of their good friend. Collin Fischer says, "He's like a brother to me. A brother from another mother."

The kids' coach couldn't be more proud. In fact, he thought it was such a good idea, he got his head shaved, too. He says, " We didn't push the kids and say this would be a neat thing to do. The kids said hey we want to do this for Matt."

The haircuts and the hysterics were all caught on tape. The team will mail it overnight to Matthew. They can't wait to hear his reaction. Collin Fischer says, "He's probably not going to say anything. He's just gonig to laugh his head off."

But more than anything, his newly bald teammates want to make sure Matthew gets their message. Fischer says, "That we're all with him and good luck."

His friends know Matthew has a difficult road ahead. They hope their support and their gesture will make him smile in the coming months.

Today this boy is getting a computer that my friend Hugh and I sent to him for his birthday. His birthday was yesterday. I hope he wasn't too bummed that he didn't get what he wanted on that day, but I know he'll be psyched today.



I read a story about him in his hometown newspaper. He lives in Montana, which is one state over from Minnesota. North Dakota is in between. He is in Seattle right now where he is recovering from his bone marrow transplant. He has Fanconi anemia just like you and Molly and Amitai. Barry has had it really rough.

Molly is in town right now with her family. They are doing tests but not because anything is wrong. They are trying to help people figure out how to fix Fanconi and other things that make people sick. Here is a picture of you, Mom, Molly and another girl who has Fanconi named Emily.



We have gone out to dinner with Molly and her brother Adam and her sister Delaney and her mom and dad twice this week. Jack has told Mom that it is hard for him to see them. He said that it makes him think of you.

He said something very sad and interesting because it is so grown up.

He said that he thinks that he is sadder than me and Mom about losing you. He explained that while Mom and I have each other, all he had was you.



I understand what he is saying.





You were very sweet with him.



Barry Simon looks ahead to turning 12
By VINCE DEVLIN of the Missoulian

Barry Simon, the Missoula boy battling a rare disease called Fanconi anemia, will live to see his 12th birthday next week.

Two months ago, they weren't sure that would be the case.

“He was literally on death's door in January,” his mother, Cindy Wamsley, said earlier this week in a telephone interview from Seattle, where she and her son have been stuck since last summer.

“I was in a conference on a Friday, I can't remember the date, where they were going over quality-of-life issues and just what I was willing to let him go through,” she says.

Simon's two sisters were summoned from California to say goodbye to their little brother.

“I mean, he was unconscious, drugged up, tubes running everywhere, in diapers,” Wamsley says. But the sounds of his sisters' voices seemed to motivate him.

More than two months later, he and Wamsley left Children's Hospital on Tuesday for new digs at the Ronald McDonald House in Seattle.

Tuesday was only the eighth day this year Simon, who attended Paxson Elementary School, has not spent in the hospital.

He is not well, not by any means. Medications and steroids have contributed to a huge weight gain for the boy, who was a wiry kid of 60 pounds when he left Missoula last summer to undergo a bone marrow transplant.

His weight nearly doubled, to 112 pounds, after the transplant, and he's currently at 97 pounds.

The hospital stay - he came down with life-threatening infections in his lungs - and the weight gain have made it almost impossible for him to walk.

“He can go about 20 feet and he's done,” Wamsley says. “He's tired and out of breath. It's like he's 11 years old, going on 90.”

He has come down with hypertension and diabetes, and is on a strict diet.

“Sodium affects blood pressure, carbohydrates turn to sugar and sugar affects diabetes, so there are a lot of things he can't have,” Wamsley says.

A typical day might include unsweetened cereal and nonfat milk for breakfast, three fish sticks and a side salad with a tablespoon of dressing for lunch, and spaghetti made with a low-sodium sauce at dinner time.

“You start reading labels, everything has sodium in it,” Wamsley says. “There are not a lot of options to choose from. It's very bland, very plain.”

Wamsley has her mother on a mission to find a laptop computer for Barry for his 12th birthday, which is March 30. It's what he wants. Asked if people back home wanted to send him a present, she said he loves calling friends and his stepfather back in Missoula, and his sisters and other relatives in California. He has a cell phone from Net10 where the minutes are pre-purchased. Net10 cards are available at major retailers such as Target, Wal-Mart and Kmart.

The 20-foot-long hikes he takes - which he tries four or five times a day - may not seem like much, but it's a huge improvement from January.

On Jan. 29 he was only able to walk five feet, and it was extremely difficult. But it was Cindy Wamsley's birthday that day.

And that was Barry's gift to his mother.

If all goes well in a bone marrow transplant for a Fanconi anemia patient, they can go home 100 days after the procedure.

“We've been here since August,” Wamsley says. “We quit counting after 100. How long have we been here - 180, 190 days? I have no idea.”

To say it's been tough for both Simon and his mother is both obvious, and an understatement.

Fanconi anemia is a genetic disease that only occurs when both parents carry the same defect in an FA gene, and leads to bone marrow failure. The odds of any one person having the defect are one in a million. The odds of both parents carrying it are astronomical. Even at that, there's a 75 percent chance any offspring will not be stricken with Fanconi anemia, and Simon was told he was case No. 992 in the world when he was diagnosed.

Wamsley and her two youngest children - daughter Brittany is living with relatives and attending high school in California while her brother undergoes treatments - moved to Missoula six years ago.

They stepped off a bus in a city where they knew no one, which is why they came here. Cindy, a methamphetamine addict, was desperate to kick her habit for fear she would lose her children if she didn't.

She figured the first step was to move somewhere where she wouldn't have a clue how to get ahold of any meth.

It worked. She's been clean since, she says, and was working as a clerk at a Missoula grocery store before her son fell ill.

She and her husband, Richard Wamsley, are separated, but Richard remains close to his stepchildren, has visited Barry in Seattle and they talk regularly on the phone.

Barry and Brittany's biological father lives in California and has had no contact with his children in years. When Barry learned he needed a bone marrow transplant, Cindy tracked her ex down to see if he would undergo tests to determine if he would be a compatible donor.

He refused.

A match with an anonymous donor was later made. Without the transplant, which carries its own set of risks, most Fanconi anemia patients don't make it past their early teens.

Barry Simon became a bit of a celebrity in Seattle, thanks to people in western Montana.

KIRO-TV did a piece on the boy, mainly because word got out about the volume of mail he receives from back home.

After stories about him appear in the Missoulian, “The mail comes in tubs,” Wamsley says. “It's still the favorite part of his day.”

The walls are covered with the cards and letters, whether they're confined to the hospital, or in a nearby apartment where Barry must remain until his doctors give him the OK to come home.

“I've kept every card because I intended to answer every one,” Wamsley says. “But it won't ever be possible. I mean, I couldn't afford the postage. People in western Montana have just been incredible, and they have no idea what it's meant to Barry.

“It's been the best part of the journey,” she goes on. “People tell Barry how his story made them grateful, that they realized the problems in their lives are just speed bumps compared to what he's going through. He loves it that people tell him they're praying for him. It makes him feel so loved.”

Several people have become regular correspondents, writing Simon once or twice a week or more.

“They're not strangers anymore,” Wamsley says. “They're just friends we haven't met.”

A Seattle man who saw the segment on KIRO contacted Wamsley and said he wanted to help out with the birthday celebration.

He's organized a motorcycle ride on April 2, when several Seattle-area bikers will take off on a tour of the Puget Sound area. The original plan was for Barry to ride on the back of one of the bikes, although that appears unlikely now.

“If he can't get out of bed on his own, I don't see how he can ride on the back of a Harley,” his mother says. “But we're going, even if we have to ride along in a car.”

She promised her son long ago he would not spend his 12th birthday in the hospital.

“I know I shouldn't have, but I promised him he wouldn't spend it in here, even if it meant going against doctor's orders and me sneaking him out,” she says.

He talks about the old days, when he could run and play and ride his bike. He misses his friends. He misses his sister, his mother misses her daughter.

They fight on, one day at a time, with a very special day coming March 30.

“I mean, it might be his last birthday,” Cindy Wamsley says, crying softly. “There was no way I was letting him spend it in a hospital.”

And by God, they won't.

Reporter Vince Devlin can be reached at 523-5260 or at vdevlin@missoulian.com

Remember how we went to Disney World with Make-A-Wish. Well, check out this girl's wish. She has FA, too.



Thu, Sep 22, 2005

Kentucky girl bags bear on dream hunt

By Jonathan Gneiser
For the Journal

Though she could never hold a rifle by herself due to illness, 14-year-old Samantha Baber was able to shoot a black bear with help from several area hunters.

Through the Pittsville-based United Special Sportsmen Alliance, which organizes hunting or fishing trips for terminally ill or disabled people, Samantha and her parents, David and Theresa Baber of Wallingford, Ky., traveled to northern Wisconsin last week.

Samantha has had two bone marrow transplants to combat Fanconi's anemia, a rare and terminal genetic disorder that leads to progressive, severe bone marrow failure, said USSA president Brigid O'Donoghue.

Lee McDonald of Pittsville was among a group of about 30 hunters from Pittsville, Neillsville, Marshfield and Collettsville, N.C., who volunteered to help Samantha hunt for bears in the Chequamegon National Forest.

After arriving at the hunting cabin near Fifield where they stayed Sept. 11, Samantha rode along with a group of hunters to check bear bait piles, McDonald said.

While rechecking the baits Sept. 12, McDonald said the group found a pile that had been disturbed by a bear.

Samantha and the hunters chased one bear for about six hours before it finally outran the dogs, McDonald said.

Early Sept. 13, the hunters found another disturbed bait site and started the chase. Eventually another hunting party called Samantha's group to report they had chased a bear up into a tree.
The bear climbed in and out of four trees before the hunting dogs managed to catch the bear on the ground, McDonald said.

Then McDonald carried Samantha within 20 yards of the bear so she could pull the trigger.

"After she got to shoot the bear, the smile on her face was priceless," he said.

Philan Susa of Neillsville donated her bear hunting tag to Samantha, and her son, Randy Susa, was among those who helped hunt the bear.

"I couldn't believe how nice everybody was and what they did," said David, Samantha's father. "We were all real proud of her."
Samantha has always loved the outdoors, David said.

"She loves deer hunting, turkey hunting and fishing," he said. "This is the first time she's been bear hunting. She really loved it."

At first Samantha wanted a rug made out of her bear, but after the hunters took up a collection, and a Fifield taxidermist donated his time, McDonald said he'll be able to deliver the bear to her home fully mounted.

"That was really something that they'd do that for her," David said.

O'Donoghue said she met Samantha after her successful hunt.

"I could tell she was really happy," she said. "That's what we want to see - the joy in their face like that. It's worth a million bucks."
The USSA has already fulfilled 600 hunting and fishing wishes this year, and O'Donoghue hopes to reach the 1,500 mark.

O'Donoghue said she's seeking more children who could benefit from the organization, because there's an abundance of donated hunts and fishing trips available.

The USSA needs more of bear hunters to donate their tags. For more information about the organization, visit http:childswish.com

Photo of the day. We took this when the Make A Wish people came over to tell you about your trip to Disney World. I was telling Rich that it will be a shock for us to go back to Disney World and not walk in the exits. It was nice not having to wait in line.