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Mom’s Search for a Cure | Sorbic acid|Potassium sorbate|Food Additives|Food Preservatives|Food Ingredients|WangLong Group co.,ltd.
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Mom’s Search for a Cure

17 April 2009 783 views No Comment

Its nap time for five year old twins Addi and Cassi. Here at Renown Medical Center they are undergoing an experimental treatment. The hope is that it will rid their bodies of excess cholesterol. They were born with a fatal genetic disorder called Niemann-Pick disease, and their mom, Chris was told nothing could be done.

“Screaming, and yelling and a little bit pushy, and being the pushy mom that says I’m not taking no for an answer here,” says Chris.

The excess cholesterol in the twins has meant developmental problems for the girls and the disease will eventually rob them of any brain activity. That’s why Chris hit the internet and found out about a substance called Cyclodextrin. A food additive, found in sports drinks, gum, even Febreeze, it removes cholesterol from the body. After much more research and work, she got the Food and Drug Administration to allow her to use Cyclodextrin as an experimental treatment on her girls under “compassionate use” guidelines. These guidelines allow for seriously ill patients access to yet unproven drugs.

“It won’t just be me, but I think in my heart for me I just feel we have something to try and it’s a glimmer of hope that wasn’t there before,” says Chris when asked how she’ll know if the treatment is working.

Chris says the girls will be given Cyclodextrin 24 hours a day for the next four days at the hospital. Then for three months they’ll come once a week for an eight-hour treatment. Urine and stool samples will be collected for the next three months to determine if the Cyclodextrin is working. While only 500 people worldwide have Niemann-Pick disease, if it’s successful, this treatment will have a far-reaching impact.

“If you talk about it with this particular gene that is involved in cholesterol you know millions of people who have cholesterol related disorders, it’s like we have to get to yes,” says Chris.

Cyclodextrin has been used in H-I-V research as well. Dr. James Hildreth showed the food additive inactivated the virus and preventing it from replicating. He, too, is interested in what happens here in Reno to the twins.

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