Wednesday, July 1, 2009

Stem-Cell Treatment Offers Hope to Colorado Boys

This article about my nephew Harrison and his friend Dominic appears in today's Denver Post. I thought you might enjoy a little update. They leave on their trip in 3 weeks.

Dominic King didn't have much to say.

Worn out from horseback riding, the 10-year-old sat quietly on a recent summer afternoon, smiling, amused by his best friend, Harrison Spiers.

Harrison, for his part, was hosting a one-man yak-fest, and his topic was one any 10-year-old boy, or former 10-year-old boy, should relate to: baseball.

Neither boy, though, volunteered comment about what will surely be the most memorable event of their activity-packed summer: the trip to Germany they're about to take. Asked about it, the boys shrug it off. No big deal. We've flown in airplanes before.

No big deal, except that this trip isn't about a relaxing summer getaway to the land of bratwurst and the Brandenburg Gate.

This is a trip about hope.

Dominic and Harrison, friends, classmates since preschool, have cerebral palsy.

And after years of watching physical therapy and speech therapy, of watching their sons — who are as smart as anybody else's 10-year-olds — struggle inside their own bodies, the boys' parents have found, maybe, real promise.

That promise is a stem-cell treatment, one that isn't available in the United States. So both boys and their families will head to the XCell Center in K├Âln, Germany, late in July.

There, technicians will collect stem cells from the boys' bone marrow. According to the clinic, the marrow is then checked for quality and quantity of stem cells. Then, several days later, the cells are re-injected, through the spine.

"It's not invasive, but they will have to be under anesthesia because you don't want them to move around," said Dominic's mom, Christina King.

According to XCell's website, "these re-injected stem cells have the potential to transform into multiple types of cells and are capable of regenerating damaged tissue."

XCell statistics indicate that 70 percent of patients who undergo the treatment for cerebral palsy experience some improvement, including decreased spasticity, better coordination and motor function, improved stability or better speech.

Voicing tentative hope

Cerebral palsy is a group of chronic conditions that affect body movement and muscle coordination. It is caused by damage to the brain, usually during fetal development or during or shortly after birth.

The March of Dimes estimates it occurs in two or three of every 1,000 births.

For many of the 800,000 people in the United States who have it, the disorder causes difficulty controlling movement and speech. Some with the condition experience spasticity.

For Dominic and Harrison, the condition has meant life in wheelchairs. It means that Dominic often communicates via a computer and that Harrison doesn't get to play football and baseball.

Neither boy's intellect is impaired. As Harrison's mother, Alicia Spiers, puts it, he understands everything he's missing.

"But he has a really good attitude. He doesn't get down too often," she said.

The boys' mothers can't let themselves voice their hopes for the treatment.

Dominic and Harrison, with their 10-year-old trust, have no such hesitation.

"He's hoping his speech becomes clearer," Christina King said of Dominic.

And improved motor skills would be nice, she said. "He drives his wheelchair and uses his computer with his head. He's hoping he can touch the computer screen."

Harrison wants nothing less than to play football.

"His wish from Santa last Christmas was new stem cells," Alicia Spiers said.

The boys, who just completed fourth grade at Cottonwood Creek Elementary in the Cherry Creek School District, spend most of their days in regular classrooms — aides help them eat, move around school and get their books out of their backpacks.

They go to birthday parties and have buddies they eat with, their moms said.

But the relationship between the boys is special.

"He has lots of friends," Harrison's mom said of her son. "But Dominic gets him."

A community united

The treatment isn't approved in the United States, and it definitely isn't covered by insurance. So the families and their friends and relatives have been pitching in, hoping to raise $12,000 apiece for the treatments.

On June 14, a hair salon offered "Haircuts for Hope," which raised about $1,600. Before that, runners and walkers tromped around the boys' elementary school and raised hundreds.

"And some little girls at swim team made bracelets they sold for $1 each and are giving the money to us," King said.

One of the girls' moms told King she was learning a lot during the fundraising process, about cerebral palsy, about stem-cell treatment.

Both moms said they've learned a lot too — about their neighbors.

"We're not alone," King said. "This community is just wonderful."

7 comments:

  1. What a neat story! I hope the treatment is successful. I am a proponent of stem-cell research.

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  2. I agree, the Cherry Creek neighborhood IS wonderful. Wish we had lived there when we, er, lived there. This is such great news, Becky! Hey, named one of my characters in MD2 Irvine after you . . .

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  3. WOW!

    Medicine is just so stinking amazing! thanks for sharing!

    prayers from Alaska!

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  4. Becky, I am so glad you posted this! We are going to seriously look into stem cell in the future for Dakin. Please keep us updated on their progress!!

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  5. Becky,
    What a great article! And how blessed the boys are to be friends. I am curious though how much of an improvement can they hope for? What are they exactly hoping to achieve and what will they consider a success? (I just find it is better to be specific in prayers:-)

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  6. Lori,
    They are trying to keep their hopes for improvement in check. Harrison's biggest desire is to run--he is such a sports fan! But if he could just get enough muscle control to feed himself, to speak more clearly, or sit up on his own then it will have been considered a success. All of these types of improvements have been documented in other patients. They have taken video and other measurements of Harrison's current capabilities to use as a baseline comparison. The results are not immediate, but usually visualize themselves within a few weeks. Thank you for adding your prayers to ours. Becky

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  7. My 13 year old daughter has cerebral palsy. She is not in a wheel chair, but she too has limited use of her left hand and arm and severe speech impediments. What a hopeful article! I have never heard of that! I would love to know how it all goes, those boys (and their parents) are so brave. It's so scary to try new things. Especially for the children who want so much to be "normal." We are very lucky. Jessie is able to do a lot that other children with her disability are not. But I know how much she would love to ride a bike, roller skate, or even take dance and piano lessons! Actually, I'm going to give piano lessons a go. She is smart, has a little trouble in some areas, but we have high hopes for her future! Heavenly Father definitely blesses us in the way of medical miracles, doesn't He? :) Thanks for the update! I will have to look into this more myself! Appreciate your sharing this!

    Cami

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Comments are much appreciated!