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http://msnbc.com/news/926313.asp?0cl=cR

Hope for Cystic Fibrosis treatment?

One mom’s search to save three sons from a deadly disease

THE TODAY SHOW

June 16 —  When 3 of her 6 children were diagnosed with a deadly disease, one

mother took on the challenge to help her children, and countless others. NBC’

s Soledad O’Brien has this report.

‘He was very skeletal looking. He had the distended belly. It was clear there

was something really wrong with him.’

— VALERIE HUDSON

       THE CASSLER BOYS: typical brothers, playing in their backyard in

Provo

Utah.

       6 year-old ny.

       3 year-old Tommy.

       1 year-old Jimmy.

       Fun loving, boisterous and outwardly healthy but inside each boy is

fighting Cystic Fibrosis, a genetic disease which coats the lungs with thick

mucus. For patients, breathing gets progressively more difficult and many die

before their 30th birthdays.

        was the first to be diagnosed, at 9-months-old.

       “He was very skeletal looking. He had the distended belly. It was

clear there was something really wrong with him,†says Hudson, the

boys’

mother.

       Hudson, a political science professor at BYU and her husband Dave

watched “Lorenzo’s Oil,†a movie about a couple with no medical training

who

found a way to help their terminally ill son.

        was inspired. “I remember after watching it, saying, you

know,

‘honey… should I quit my job? Should I go to medical school?â€

       Soledad O’Brien: “When said that, did you think,

‘That’s a

great idea, we need to figure out a way that we can do this, do something?’

Or

did you think, ‘She’s insane, this is crazy?’â€

        Cassler: “We saw that there hasn’t been that much

accomplished

since they discovered the gene in 1989. I started to believe that what

was feeling was the right way to go.â€

       So continued to work full time, and she took on a second full

time project: researching Cystic Fibrosis on the Internet.

       She read thousands of scientific abstracts written by researchers

around the globe.

       “I couldn’t recognize hardly any of the words, you know, unless

— the

one’s I did recognize were like ‘the’ and ‘and,’†says Hudson.

       She borrowed her oldest son’s high school anatomy text book and

taught

herself basic biology and biochemistry. She was exhausted, but it was a race

against time.

 “When doctors have given your child a death sentence and your child is 3 and

the average age of death is 23, you just don’t have time to waste,†says

Hudson.

       Her breakthrough came in August 1998 — after reading an article

about

glutathione, a protein found naturally in the body that helps regulate the

immune system.

       Cystic Fibrosis patients have very little glutathione — it gets

trapped in the cells, and seems to contribute to the build up of mucus.

thought glutathione supplements might help break down the deadly mucus.

       Hudson says, “I was assuming, ‘Ok, I can’t cure it. But isn’t

there

something that can be done to slow the deterioration?’â€

       With her pediatrician’s blessing, and help from a friend who owned

a

factory that could produce glutathione, started on the

supplement.

       ’s infections cleared up, he developed a ravenous appetite. The

thick mucus that made him cough and wheeze thinned out.

       Hudson: “For the first time in his life, he started to drool! Can

you

imagine a two-year- old who’d never drooled in his life?â€

       O’Brien: “How bout his weight?â€

       Hudson: “Oh boy his weight. When he was first diagnosed he was

barely

on the weight chart. Well after several weeks, a couple months on glutathione

ny had jumped to the 70th percentile for weight.â€

       A year later, despite the risk of having another child with Cystic

Fibrosis, got pregnant again.

       O’Brien: “If you know you have a genetic disease why would you

keep

having children?â€

       Hudson: “We want to tell that we didn’t stop having more

children because of him and who he was. We began to think of Cystic Fibrosis

more in

the way that people now think of diabetes. We no longer view cystic fibrosis

as an utter tragedy.â€

        and Dave’s fifth child, Tommy, was born June 1999. He too

was

diagnosed with Cystic Fibrosis.

Tommy started on glutathione almost immediately, and like he responded

well.

       ’s next move: getting her findings into a medical journal.

       Four months after Tommy’s birth, ’s article was published.

Some in the medical community were not impressed.

       “There was one researcher who, when he found out I was a political

scientist, he was actually very upset at me. He said, ‘You are wasting my

time.

You’d be better off baking cookies for bake sales to raise money for my

research,’†says Hudson.

        figured a clinical trial would give her theory the

credibility

it lacked. She persuaded Dr. Bishop, a pulmonologist and a director at

the Utah Valley Regional Medical Center to oversee the trial.

       Bishop says, “We think that glutathione has received insufficient

atte

ntion. I’m not sure why more PhD folks and why more MD folks haven’t jumped

on this theory because its something that makes good sense and it looks like

it

should have been explored a long time ago.â€

       They raised $50,000 to fund the study. By summer 2002, with 19

children enrolled, testing got underway.

       By then, was pregnant with her sixth child. When Jimmy was

born in May 2002, he too was diagnosed with cystic fibrosis

       Jimmy started taking glutathione. And slowly word of glutathione was

getting out to other CF parents whose children are using more conventional

methods like a feeding tube and a vibrating vest to break up the mucus in the

lungs.

       The results from Dr. Bishop’s trail are now in, and have been

submitted to — in his words — a much respected medical journal. Both Dr.

Bishop and

know their findings are preliminary but hope that will change.

       Dr. Preston , Medical Director of the Cystic Fibrosis

Foundation, says glutathione while promising is experimental.

       “Because it’s an experimental therapy we really don’t know if

it is

indeed safe or if it will offer a great deal of benefit for CF patients. But

there is hope it will. Families need to know there are other proven therapies

we

would want them to use them before using an experimental therapy.â€

       For , her greatest hope is that this small step will finally

be

embraced by medical researchers, who can take her work to the next level, for

her children, and all children with cystic fibrosis.

       The use of glutathione in Cystic Fibrosis patients is still

experimental. The National Cystic Fibrosis Foundation recommends patients

talk to their

doctors before using glutathione.

Becki

YOUR FAVORITE LilGooberGirl

YOUNGLUNG EMAIL SUPPORT LIST

www.topica.com/lists/younglung

Pediatric Interstitial Lung Disease Society

http://groups.yahoo.com/group/InterstitialLung_Kids/

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