Wednesday, November 19, 2008

Meet Eugenie Forsyth

Fifth in a Series --

First -- a quick follow up on the meteor shower. We missed it by a day. Some astronomers we are, aye?

We have met most of the folks who are also here for these three weeks. One of the families, Angela Richard and her daughter Eugenie (You-jah-knee) Forsyth are here for a ten week program of therapy. Here's an excerpt from the web site created by Eugenie's mother --

"Eugenie had birth complications and was asphyxiated at birth, resulting in brain damage. She has been diagnosed with Cerebral Palsy, as well as a seizure disorder. She has Global Developmental Delay. Eugenie cannot walk or talk, nor can she feed herself. But she is the happiest, most inspiring kid, and she never ceases to amaze me. She spreads sunshine wherever she goes, and everyone she meets becomes her friend. Eugenie has a lot to teach us."

Eugenie and her mother made their first visit to Ability Camp 2 ½ years ago and since then have spent 30 weeks in total in therapy at the facility. Eugenie has learned to sit, stand, walk (with assistance) with a Kaye Walker, feed herself (with assistance), and has gained strength, stability, balance, stamina and motivation.

Her mother has developed fund-raising projects to help defray the expense of the therapy as the cost is borne by the family rather than insurance. Last year she raised $17,000 to pay for a ten week session and hopes to achieve the same goal this year.

Angela is high energy and completely dedicated to doing everything possible to maximize Eugenie's development and her world is fueled by hope and a belief in endless possibility.

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I've overheard several of the families talking about their decision to participate in stem cell therapy. One of the adults who is here has been to Cologne, Germany, for two such treatments. Bone marrow is extracted from the patient's hip, the stem cells are precipitated out and then are injected back into the patient, usually via spinal cord. You can learn more at One of the children has been to China for stem cell treatment. The cost for the treatment alone ranges from $20K to $40K, with travel and housing all additional. Even though the procedure utilizes the patient's own cells and is thus outside the scope of the fetal stem cell argument, the treatment is unavailable in the U.S. except through admission to clinical trials which are very limited.

Is it effective? Anecdotal reports are positive but the scientific community has yet to fully endorse the therapy. You can read more at but remember that the web site is designed to market the therapy.

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We had about three inches of snow yesterday. Nights are cold but during the day the temperature hovers right around freezing.

I'm surprised that tomorrow it will already be a week since we began our adventure.

Talk to you again, soon.

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