STANDING TALL

In truth, his heart’s desire is the same as thousands of other 11-year-old boys.

But what would he pick if Sam Allred could choose anything?

“I’d be taller.”

He’s not greedy, though. His wish isn’t to be 6-foot-8 like Lebron James so he can make millions in advertising endorsements and contracts to play in the NBA.

Rather, Sam wishes for a growth spurt so when he goes to Disney World he doesn’t have to sneak onto his favorite ride with his mother’s rolled-up socks tucked up under his heels.

Mostly, he’d just like to be tall enough so people would not stare.

The guesser at the Alaska State Fair last year thought Sam was 6.

In that case, his cherubic face and height won him a prize. Looking back, though, Sam says he wishes he’d spent the extra money on a second guess. “I know I could have won a bigger prize.”

That was one of the rare times when his kidney disease was actually an advantage, he said.

Kindness for Kids offers compassion to others

In the car on his way to yet another doctor’s appointment, Sam said something that had been bouncing around in his mom’s brain for weeks.

“Maybe I got this disease so I can help people,” he told his mom, Angie.

When he was 3, Sam was diagnosed with IgM nephropathy, a rare kidney disease that causes his immune system to attack his kidneys. It took lots of tests and a kidney biopsy to find the problem, but doctors don’t know what caused it or how to fix it, Angie said.

Nephropathy is a relatively rare kidney disease that affects about 16 in 100,000 people. But Sam has a more rare form of the disease called IgM nephropathy, which affects about 1 of every 16 with nephropathy.

Sam takes the steroid Prednisone, which keeps his body from attacking itself. But the drug’s side effects stunt his growth, make his body swell and weaken his immune system, among other things.

His chronic disease and frequent relapses have stymied his doctors and frightened his family for the past seven years. He’s been hospitalized seven times, his mom said. The longest stay was about a week.

Sam’s response has been heroic. Though he is locked in his own life-and-death struggle, he acts with courage and compassion to help others.

To help Sam help others, the Allred family has formed a nonprofit called Kindness for Kids and is applying for 501(c)(3) status. Donations — accepted at kindnessforkids.org — will provide grants to other children and families dealing with chronic illnesses and disabilities.

“This is from Sam’s heart,” his mom said. “He wants to help other people.”

The non-profit also offers a monthly support group for parents and children coping with chronic illnesses and disabilities.

And he plans to raise funds to purchase two Fun Center mobile entertainment units and two PC Pals for children hospitalized at Providence Alaska Medical Center.

Spending day after day in the hospital is tedious, Angie said. Technology like Fun Centers and PC Pals provide a diversion from treatment.

Teaching peers about his chronic illness

The bags and stacks of brightly colored pillows that line one wall in the music room at his family’s Wasilla home are part of another project Sam is working on for Providence.

He’s working with various groups from elementary schools to senior centers to craft 1,000 comfort pillows to give to children at Providence. He dropped off 350 pillows at Providence in July.

Sam got the idea for his pillow project when a group of Girl Scouts gave him a pillow during one of his hospital stays.

“It meant a lot to Sam that someone was thinking about kids who are hospitalized,” Angie said.

She said one local woman even donated 100 pillows she’d made herself.

Last school year Sam took his pillow-making project to a couple of schools in the Anchorage and Mat-Su school districts. At Mirror Lake Middle School and Gladys Woods Elementary, students helped him stuff dozens of pillows while he shared with them what it’s like to live with a chronic illness. This fall, he plans to visit two schools a month.

During these school visits, Sam also talks to students about compassion and about his book on the subject.

When he was 9, Sam wrote a book called “Opening Hearts” about his experience living with a chronic illness. Illustrated by his sister, Emily Allred, and published by Publication Consultants in Anchorage. The book is for sale online at cuppycakesam.com.

Kindness for Kids is the umbrella nonprofit for all Sam’s compassionate giving. It’s an important tool that helps mother and son focus on helping others instead of feeling sorry for their own struggles, said Angie, who also is president of the nonprofit.

“You can feel really helpless,” she said.

Angie is busy. In addition to Sam’s medical care, she homeschools her children. She is mom to 11 children, though only seven are still at home.

Internet stardom and controversy

You might also recognize Sam from television or the Internet. Millions of people — more than 22.5 million — have viewed his YouTube videos since his sister Hannah posted the first one to her account in October 2008.

Sam’s “Chubby Cuppy Cake Sam” video is the 53rd “Most Viewed” on YouTube. It is the 39th “Most Discussed” and was selected as the 42nd “Most Favorite.”

But the whole thing began as a way for a little brother to bother his sister.

Hannah, then 16, and a friend were listening to a children’s song called “You’re My Honeybunch” on the “Balloons” CD. After hearing the song one too many times, Sam starting mouthing the words sung by 3-year-old Amy Castle.

The Allred siblings thought their version was comic genius and showed their father, Scott, who suggested Sam spice up the ending with his dancing eyebrow routine. The two taped a second version with the flashy eyebrow finale, which the whole family thought was superb, so they posted it to YouTube.

But no one was expecting the fame and controversy that followed.

Some people who saw the Internet video posted mean comments saying that Sam was obese, or that the video was exploitive.

There was an upside, too. When the producers of the CBS show “The Doctors” saw the Cuppy Cake Sam video, they reached out to Sam and his family to try to help him find alternate treatments. They flew Angie and Sam to Los Angeles to be on the show in December 2008.

Next “The Tyra Banks Show” came calling. The show flew Sam and Angie to New York City to be featured with Amy Castle on a January 2009 episode about cyber celebrities.

Sam’s also been featured on “Inside Edition” and “Jimmy Kimmel Live.”

“If you judge people before you get to know them, you’ll feel really bad later,” Sam told the audience when he was featured on “The Doctors.”

Because of the cruelty Sam experienced on the Internet, he and his mom also are working to establish Alaska chapters for the groups Teenangels and Tweenangels, programs for children ages 7 to 18 that teach Internet safety.

‘You are in the driver’s seat’

Sam knows a lot of things the average, healthy 11-year-old doesn’t. He knows about IVs. He’s familiar with taking a regimen of medicines and their various side effects. And he can tell you in detail about boring hospital stays and endless doctors visits.

“When you have your health, it’s everything,” Angie said.

After dealing with Sam’s chronic illness for several years, she said she found out the doctors didn’t know what caused his disease or how to cure it.

“You just want something that will work,” Angie said. “After five years or so, you reach a point where you are tired of it.”

She said she used to do whatever the doctors recommended. Until Sam had a pain in his hip that each of six doctors diagnosed differently. One doctor wanted to cut into Sam’s leg just above the knee and insert a metal rod, and then do a bone biopsy. Sam’s parents said no.

“Listen to what your doctor tells you, but do your own research. Talk to lots of people. Pray about it. And don’t ignore your gut feeling,” Angie said. “It’s not your doctor, it’s you. You are in the driver’s seat.”

Living with her son’s chronic illness was easier before she realized doctors couldn’t restore Sam’s health, she said.

“I had to face the fact that they didn’t know and I didn’t know,” Angie said.

That’s when they started trying more natural approaches, including Sam taking up to 50 daily herbal supplements, visiting Chinese herbal specialists, eating special diets and acupuncture.

“I’ve put him through a lot,” his mom said.

For the past two months he’s taken a new supplement called protandim that is designed to boost his body’s production of antioxidant enzymes.

“I think there is a lot of hope for Sam and other people who are chronically ill,” Angie said.

Mother and son — and the rest of the Allred’s family, friends and fans — hope for a cure, but say they trust Sam’s illness is part of God’s plan.

“My faith doesn’t depend on outcomes,” Angie said. “I’m developing a greater trust in him, that he knows what’s best.”

For more information about the organization, visit kindnessforkids.org or e-mail info@kindnessforkids.org.