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The Promise of Cord Blood for Kids with Special Needs

Stem cells could offer a better life for some children, like a little girl with cerebral palsy here in southeast Michigan. Will more families explore the possibilities?

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"Hopefully what will come out (of trials) is a wider knowledge to the public about the potential these cells have," Brown says, "so that everybody does have access to their own."

Cost may play a role, as well. "The cost of banking can vary between banks, with costs usually in the $1,500-$2,000 range," Brown says. Health insurance, she notes, does not cover the cost of banking cord blood, but CBR has partnered with some insurance providers to "offer special savings" on banking.

After the initial start-up cost, banks charge an annual storage fee. That cost can vary, depending on the bank, but is about $125. Some providers also may help cover doctors' fees for collecting, Brown adds. CBR offers payment plans and a gift registry, so friends and family can contribute to the costs.

The future for Allison

Over the past year, the Thurmans have begun to notice a difference in Allison's muscle tone. Her once-rigid and stiff muscles have loosened up, Erica says.

Now, they're working with her physical therapist, Donna Tavalieri of Pediatric Potentials in St. Clair Shores, to strengthen the weakened muscles.

Tavalieri has been working with Allison since she was a year old. She says Allison was "moving in a really good direction" before the infusion, but "during and after infusion, she seems to move smoother.

"We're trying to capitalize on that as best we can," she says.

Today, Tavalieri is still working with Allison on her walker – and has been for about a year, she says.

"It's a slow and steady process, but she has really continued (improving)," Tavalieri adds. Erica says Allison "still has issues with sitting up, but she's better."

The Thurmans took Allison for her fourth and final observation visit to Georgia on March 5 – a moment Erica calls "bittersweet," when thinking back on the past year.

Allison, who turned 3 at the end of March, is on a packed daily schedule with school and therapy sessions, Erica says, which keeps the whole family busy. She receives physical therapy and occupational therapy every week – in and out of school, which she now attends Monday through Friday.

"Her teachers at school have remarked that she's very independent," dad Mike says, "and she likes to do things on her own and try different things. Even though she's got the physical disability, she seems to be participating in a lot of things."

In the meantime, Allison – who her dad says has "a great sense of humor" and "sparkling personality" – is a bubbly kid who enjoys snuggling and cooking in the kitchen. The family bought her a special stool for Christmas that helps to boost her up to the counter, Mike says. Allison and Audrey both enjoy playing, reading books and swimming together, Erica says.

"(Allison's), in my opinion, very normal and very smart for her age," Mike says. "Other than the fact that she's not walking independently right now, you wouldn't know that there's really anything wrong with her."

Cells and special needs

Erica and Mike both say they want to see Allison "be happy and reach her maximum potential, whatever that may be" – in addition to seeing her walk independently and "live life to the fullest."

"One thing we try to stay away from is to say we want her to be 'normal,' because to us she is normal," Erica says. "You really can't say that, just because some people may look at her and say she's not normal. Because to us she is."

But without completed clinical trials, experts say it's difficult to say what the future of cord blood cells will be in regenerative medicine.

"We're all very excited about regenerative medicine," Brown says. "We're excited for the sort of things we're seeing. Just the fact that we're seeing these trials, that says a lot as to where this could go."

Erica says there's only a small sample of Allison's cells left that they most likely won't be able to use for anything. But that's OK with her. "It was a decision that we had to make," she says.

"We had to ask ourselves, 'Is this something we want to use?'" she says. "It's a catch-22, and it was a decision – but it wasn't a hard decision, just because you have to take that chance. Even though it's a gamble, that's why we had them."

The Thurmans would "definitely encourage other parents" to save their child's cord blood cells.

"You just never know. We didn't know there (were) any problems with Allison. And we did it with our first daughter," Erica says. "We think it's a very special gift you can give your child as an insurance policy."

Mar 31, 2012 03:49 pm
 Posted by  hopesdaddy

13 years ago, a baby was born, her name Hope. Hope was born and the one major item in our to do list prior to her birth and within 48-72 hours of her birth was to get her cord blood to our chosen cord blood facility that we use, cord blood registry. Cord blood Registry, the inovators that have paved the way for such a wonderful opportunity for new couples starting a new family. Having had several members of the family come down with cancer, diabetes and most recent open heart on one of our cousins, we know the value of banking cord blood. We are thrilled once again to see Metro Parent Magazine making its readers a part of their family by choosing to write about such wonderful topics as this one...i hope all your readers continue to research even more reading and findings on this topic, we saved Hope's cord blood 13 years ago and will continue to bank it yearly. Thank you Metro Parent for caring enough to share! Hope and Hope's Daddy give this article and Metro Parent a super four big thumbs up! Way to Go!

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