Wasilla boy battles kidney disease, teaches kindness

WASILLA — That Sam Allred, 12, hasn’t had an ordinary life isn’t entirely bad.

His resume includes TV appearances on the “The Doctors,” “The Tyra Banks Show,” “Inside Edition” and “Jimmy Kimmel Live.” He’s met U.S. Sen. Lisa Murkowski and U.S. Rep. Don Young, among other federal lawmakers.

And Sam’s “Chubby Cuppy Cake Sam” video on YouTube has been viewed more than 62 million times since his sister Hannah posted it in 2008.

Still, if he could have anything, he says he’d just like to be taller.

When Sam was 3, he 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, and doctors still have no idea what causes the disease or how to fix it, said mom, Angie.

Nephropathy syndrome is a relatively rare kidney disease that affects about 5 in 100,000 people. But Sam has a more rare form of the disease called IgM nephropathy, which affects about 1 of every 100,000.

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 nine years. He’s been hospitalized seven times, his mom said. The longest stay was about a week.

But Sam hasn’t had a relapse since he started low dose allergy therapy in January with Dr. Ty Vincent In Wasilla, Angie said.

He also receives acupuncture treatments from Kevin Meddleton at Alaska Acupuncture in Palmer.

“They are amazing and they are both just a Godsend,” Angie said of the business that both provide care for her son free of charge.

“The way they treat Sam, the extra time and care they spend,” she said. “They are completely supporting us. And having their support has helped us to change our ability to deal with the challenges of illness.”

Boy’s book helps open hearts

Earlier this month’s Sam’s adventures took he and his family to Washington, D.C., as part of a effort by Nephcure Foundation to lobby lawmakers for funds for kidney disease research.

The Allreds flew from Anchorage to Washington, D.C., Oct. 4 and the next day they had nine appointments with various U.S. Senators and Representatives, she said.

“Our job was to say what it is like to have a kidney disease,” Angie said.

The trip also provided the family with its first opportunity to meet another child with the same kidney disease Sam has, she said.

“That 5-year-old boy was so excited to meet Sam,” Angie said. “To know that another kid had the same illness.”

Sam also gave the boy a copy of his book, “Opening Hearts,” which the boy took to his school in Alabama and his teacher read to the class.

The trip also included a visit to Hershey World and a performance of Les Misérables.

“That was probably my favorite part,” Sam said of the musical.

He wrote “Opening Hearts” when he was 9 about his experience living with a chronic illness. Illustrated by his sister, Emily Allred, and published by Publication Consultants in Anchorage, it is available online at cuppycakesam.com.

Sam and Emily will sign copies of their book from 11 a.m. to 1 p.m., Nov. 16 at the library on Joint Base Elmendorf-Richardson.

Sharing compassion

Angie and Sam also use the book in Anchorage School District classrooms to talk to students about compassion. And, thanks to a $500 grant from the Alaska Initiative for Community Involvement, Sam also asks students to help by making Comfort Pillows to share with other kids.

He said he came up with the project after a group of Girl Scouts gave him a similar pillow during one of his hospital stays.

Now bags and stacks of brightly colored pillows have overtaken the family’s music room — they are left from the 1,700 pillows students helped Sam make between January and May.

Angie said she applied for a received a grant from the same organization this year, too, which they plan to use to build Possibility Packs, gallon bags filled with toiletries such as soap, toothbrush, toothpaste and shampoo that they will share with the local women’s shelter and homeless people.

“When you do service, the natural reward is you feel good,” she said.

Life is filled with uncertainty, Angie said. But she said she’s sure of one thing. “As mom, I know Sam is on a mission of compassion.”

That fundamental character trait was also at the root of the boy’s Make-A-Wish Foundation request.

“I wanted do something fun with my family,” Sam said. But it had to be his whole family, or the trip was off, he said.

In January, the Allred family — all 13 of them — flew to Orlando, Fla., where they spent a week at Henri Landwirth’s “Give Kids The World” resort, which serves families with chronically ill children worldwide.

The resort included lodging, meals and entertainment and all of it is free for families, she said. “They had a surprise of some kind for us every day.”

The trip — a gift from Make-A-Wish Foundation and the Give Kids The World Foundation — also included passes to Universal Studios and Disney theme parks.

In preparation for their visit to the theme parks, Sam also got a pair of Skechers Shapeup shoes so he’d be tall enough to get on the rides at Disney World, he said.

Since returning, he’s worked to raise awareness of Make-A-Wish Foundation’s Miles for Smiles program that collects air miles to help the non-profit grant wishes.

“That was a really good trip,” Sam said.

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

Contact Heather A. Resz at heather.resz@frontiersman.com or 352-2268.