By: Jenny B. Davis
By: Kyle Whitecotton
|Ashley Irwin had her first open-heart surgery at 2 weeks old. Last year she wrote a book, A Wish for Hope. Proceeds go to A Wish With Wings.|
|Devin Henry has a rare form of dwarfism. He started his own T-shirt company for little people called Lil' D Designs. A percentage of his profit goes to help people like him.|
|The four Marlow boys turned their Colonial Golf Tournament lemonade stand into a fundraiser that has successfully raised thousands of dollars for local children's charities.|
|Alexa Sankary started raising money for neuroblastoma research through Cook Children’s at 9 years old when her best friend, Michael Mancuso, died from the rare cancer.|
|Colon cancer survivor Taylor Helland spends her free time raising money for pediatric colon cancer research and speaking for the American Cancer Society.|
— they play in the school band, have a black belt in tae kwon do, ride bikes or create tales about talking animals, but they are exceptional insofar as they dedicate their free time to raise money and awareness for other children in need.
It’s because these children have seen or experienced hardships they never want their petite peers to endure, and all of them work to carry out their wishes through sophisticated fundraisers and awareness campaigns.
Ashley Irwin Ashley Irwin had her first open-heart surgery at 2 weeks old, then at 15 months old and at 4 years old. She was born blue and not breathing. They soon found out she did not have a pulmonary artery, so she wasn’t getting blood to her lungs, and a hole in her heart was among numerous other problems. She was diagnosed with pulmonary atresia and tetralogy of fallot, which is a rare heart defect that doesn’t allow the blood to flow properly to her heart.
But this didn’t stop her from wanting to help others. Last year, 11-year-old Ashley wrote a book, A Wish for Hope, about a butterfly that brings a sick little girl love and hope. Its proceeds go to a Fort Worth nonprofit that made all her dreams come true.
“I feel like giving something back is a way of saying ‘thank you’ for what they did. I didn’t learn that from Mom; I figured it out myself,” she said.
Fort Worth’s A Wish With Wings set her up with Give the Kids the World outside Orlando. They sent her to their 70-acre dreamland village where kids can eat ice cream for every meal, celebrate Christmas every Thursday, and the village mayor (a huge bunny rabbit) tucks them into bed each night.
After all, their goal is to “provide memorable, magical, cost-free experiences to children with life-threatening illness and their families.”
But the experience was so much more than that. Ashley said they made her feel special, loved and unforgotten. She vowed to pay it forward. Ashley hopes her book makes lots of money for A Wish With Wings so they can grant other children’s wishes and raise awareness. In its first year, Executive Director Judy Youngs said the book has helped raise more than $2,500 for the nonprofit. But that’s not all.
“The biggest asset has been in ‘friend-raising,’ and sharing [the book] to raise awareness of our mission,” Youngs said.
Ashley is a doll in every sense of the word. She’s petite with big brown doe-like eyes, dark hair and porcelain skin. That day she wore a pink-laced dress and purple-rimmed glasses. She was eloquent, sincere and sweeter than sugar. She turned red and shivered with excitement when she talked about her memory of Give the Kids the World’s village.
Every May in downtown Fort Worth, A Wish With Wings has its Butterfly Wishes fundraiser. She hoped to have her book published in time to sell at the event.
“I would like to keep doing this just to show people that they’re not alone,” Ashley said.
Devin Henry Devin Henry, 17 years old, wheels into the coffee shop on a bike made for a 2-year-old. His dad helped him trick it out to fit his son’s small body. Training wheels were removed; they added custom chains and handle bars, bigger BMX pedals, and stickers now decorate the metal body, a project that cost $450 when completed. Custom bikes typically start at $2,500, but the Henrys don’t have that kind of money after paying for all of Devin’s surgeries.
“It looks cool and it works,” Devin said. Devin has a rare and painful type of dwarfism called spondyloepiphyseal dysplasia congenita (SED), and he rides the bike around because he can’t walk more than a few feet before his body gives out. He’s in pain most of the day, which is why he’s on the path to create a nonprofit called Maximum Mobility to help fund custom products like bikes, car seats for dwarfs and additional items that increase other “little people’s” quality of life.
At 11 years old, he started his own “confidence-building” T-shirt company called Lil’ D Designs for little people, short people and dwarfs. He started the company to protect himself against bullies at school who kicked his scooter over or poured water around it in the bathrooms. Instead of yelling at them, he made T-shirts that say, “Tiny is awesome” or “Bigger Person” with an arrow pointing to him. One design has a Superman logo but with an SD on it, which stands for Super Dwarf. He makes them in a youth large because it is two inches shorter than the adult small. He gives a percentage of the money to help people like him.
“Devin is a little person but has Donald Trump’s personality,” his mother, Tracy Henry, said.
He says if he’s going to do anything, he’s going to do it “like a boss.”
Devin has had parts of his femur removed, had spinal surgery, and one day will have to have his hips replaced. His fingers are half dislocated most of the time, which is also painful for him.
“It could frustrate me, but there is really no point,” Devin said.
The Marlow Boys’ and Friends’ LemonAid Stand Michelle Marlow has a reputation for being a local saint. When she’s not raising her four boys and chickens, she’s tirelessly giving back to the community. So it is no wonder her sons, William, 6; Henry, 11; Thomas, 13; and George, 15, decided to turn their Colonial Golf Tournament lemonade stand into a fundraiser four years ago. In just a few days, these boys have been known to raise $25,000 for local children’s charities.
And then it went viral. At first other neighborhood children would donate their lemonade stand monies to the Marlow boys, even if it was only $27. But then neighbors like the Diamond girls, the Pauls, the Hurns and the Mayfields realized the Marlows have an advantage with prime location on the corner of Colonial Parkway and Country Club Drive. Golf pros like Phil Mickelson would come meet the boys and leave exorbitant tips. Some gave them golf lessons in the backyard. So the Colonial Hills neighborhood children joined hands and created the brand LemonAid.
“Their goal was to work hard and make the most money in one weekend to help the less fortunate,” Michelle said.
The children got creative, and the adults stood back and watched. Thinking of clever ways to bring in more money, they now take donations instead of a fixed price. Then they packaged the lemonade with one of their grandma’s homemade cookies she bakes to help them out every year. George Marlow and Ryan Prince came up with the satellite wagon, which brings water in an old rusty red wagon to thirsty tournament goers, bringing their donation jar with them.
William Marlow loves to work these satellite wagons and will return with money pouring out of his pockets. Oldest of the children is George Marlow, so he manages LemonAid and comes up with crafty marketing strategies. Little Sadie Paul loves to hold up signs and cheer for the stand. George even designs T-shirts with their LemonAid logo on the front and sells them in front of Yogi’s Bagel Café.
“I am really excited because we get to sponsor others in need, and it is fun getting to see how it works. You actually help kids in need,” little Ruth Mayfield said.
After local charities give presentations, these tiny businessmen and women hold meetings to decide where they should send their money each year. It is through these presentations they learn many children are less fortunate than they are.
In the last four years, local businesses have gotten involved. Merry Maids matched their donation one year. Wells Fargo gave money another. They have had members donate premium parking spots.
Owner of the Dodgers and Colonial’s 2013 chairman of the Crowne Plaza Invitational Bobby Patton throws in a hefty tip as well.
“It can only get bigger, and we can get more people involved,” Thomas Marlow said.
Alexa Sankary While 15-year-old Alexa Sankary’s peers are in class at Paschal High School wearing oversized T-shirts and wind shorts, she’s presenting her 5K Blast fundraiser to a group of professionals at the UNT Health Science Center. Dressed in little turquoise pants, a cute white sweater with a chunky, short gold chain and a little makeup, she’s ready for her big meeting.
Her parents describe Alexa as an “old soul.” She’s compassionate, beautiful, petite, outgoing, says “like” a lot, is a black belt in tae kwon do, doesn’t like science and wants to market for GoPro Camera Company when she grows up. On the outside, she looks like your average high school freshman.
But she started raising money for neuroblastoma research through Cook Children’s at 9 years old when her best friend, Michael Mancuso, died from the rare cancer. She watched him writhe in pain and suffer illness from his treatments for three years. He hated feeling that awful and did not want other children to experience what he did. So the day before he died, he asked his best friend, Alexa, to find a cure.
Just a few years later, she’s well on her way. She raised $228,000 last year alone, bringing her total donations to more than $600,000.
“She always sets these crazy goals, and we’re like OK, but then she always goes past it,” her mother, Kristin Sankary, said. “The first year [six years ago], she wanted to make $15,000 but made $19,000. Every year it gets bigger.”
Alexa remembers the day Michael died vividly. She knew he was sick and back in the hospital, but she never thought he would actually die. That weekend she left for Austin but went to see him first.
“It was almost like he knew,” Alexa said.
When she came back from her trip, she went to his house to give him a necklace she’d bought him, but she saw a bunch of cars in front. He had died over the weekend. “It was more of a sense of peace and relief,” she said. “I remember how long he had been fighting. I cried, but after 10 minutes, it was like I knew he was OK.”
March 29 marked the sixth annual Blast 5K walk/run, and they hope to raise $250,000 in 2014.
With the money raised, Cook Children’s built a specialized MIGB therapy unit—a treatment in which doctors use liquid radiation to target neuroblastoma cells.
As Alexa gets older, she’s starting to realize just how many lives she’s touched. Through her fundraising, she’s met so many children and their families with neuroblastoma. “It went from wanting to help one person to changing all of these neuroblastoma families’ lives,” Alexa said. “It is amazing how all of these people have come together, and [this walk] gives them hope and connections…having people that understand what you are going through.”
Taylor Helland On May 30, 17-year-old colon cancer survivor Taylor Helland will walk 7 p.m. to 7 a.m. through the night until the sun rises in a midnight shift relay race to raise awareness for colon cancer. The dark night resembles the darkness she and others went through to beat a cancer that is so rare in children the survival rate is 13 percent. When it came back on her ovaries, the doctors said she had a zero chance of survival.
“Like cancer, you are walking through the night, and in the morning the sun comes up and everything is better…in the end you see the light,” Taylor said.
At this event, Taylor will speak about being a survivor, something she does often to bring hope to other children fighting cancer and despairing parents. She said most money goes to research for adult forms of colon cancer, which is why the survival rate is so low in children. It’s so rare most people don’t think to fund their research.
Taylor was diagnosed at 14 years old. She didn’t know what to expect. All she knew was that she didn’t want to die.
“It was like, well, I guess I have to beat this,” she said.
And she did beat it, until the cancer came back aggressively. The pain and nausea was so much worse than she imagined it would be. Doctors started talking to her parents about making her comfortable because she’s probably not going to live. “It was like, is this really happening?” Taylor asked herself over and over.
But the chemotherapy worked, and they removed her ovaries so the cancer was self-contained. The miracle is Taylor has been cancer-free for a year now against all odds.
Since that horrific first night she went to Cook Children’s Medical Center with stomach pain, she has spent her free time raising money for pediatric colon cancer research and speaking for the American Cancer Society.
“You kind of feel isolated and different,” Taylor said, which is why she doesn’t want other children to ever feel that way.
“Her biggest goal is to prevent some other 14-year-old girl from having to go through what she went through,” her father, Bob Helland, said.
Her dad tried to help her raise money by reaching out to hot shots like Jerry Jones, but he never heard back. So Taylor and her friends at Martin High School in Arlington made an 11-minute lip-synching video called Lip Dub (if you want to search for it on YouTube). The entire school got involved in honor of Taylor. People made pledges based on the number of views online. For example, if she pledged $1 per view up to 100 views, she would donate $100.
The video now has north of 250,000 views, and the school pulled together $30,000 to send to an MD Anderson doctor for pediatric colon cancer research and trials. Although she had all of her chemotherapy here in Fort Worth at Cook Children’s, she had her two major surgeries at MD Anderson and spent months recuperating there.
Taylor’s life has changed immensely in the last three years. She looks forward to starting TCU in the fall. She wants to major in strategic communication and public relations to become a voice for cancer nonprofits.
“I had to miss school so much that I now love school,” she said. “I am so much closer to my family and friends. I am more involved in the community. I have learned not to take the little things for granted…[and] appreciate every day because you don’t know how much time you have. I know that is cliché, but it is so true.”
These are just a few of the prodigious, young hearts in the Fort Worth area working to help other children. There are many more who would make even the most philanthropic grownup inspired.
photography by Alex Lepe
By: Jenny B. Davis
By: Kyle Whitecotton