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CNN Live Event/Special

Stem Cell Research Supporters Speak on Capitol Hill

Aired July 17, 2001 - 13:12   ET

THIS IS A RUSH TRANSCRIPT. THIS COPY MAY NOT BE IN ITS FINAL FORM AND MAY BE UPDATED.

THIS IS A RUSH TRANSCRIPT. THIS COPY MAY NOT BE IN ITS FINAL FORM AND MAY BE UPDATED.
JOIE CHEN, CNN ANCHOR: There is, as we have pointed out, a great deal of discussion on Capitol Hill about the stem cell research question. News conference under way now with a number of the lawmakers involved in this. Let's listen now.

REP. CAROLYN MALONEY (D), NEW YORK: ... medical research that we can offer. You will meet some of those people today. We have called these patients the seven faces of stem cell research. But in reality, there are millions of faces that will be affected by the president's decision. Let's hear from America! Let's hear from the patients.

I'm now going to introduce you one of the faces at a time to, first of all, two faces: Daffney and Elisa Thomas. Daffney Thomas is the mother of 4-year-old Elisa who is diagnosed with Rett Syndrome. You are going to hear how they hope with stem cell research to be able to cure Elisa's Rett Syndrome. So, it's my pleasure to introduce you to Daffney Thomas.

(APPLAUSE)

DAFFNEY THOMAS, STEM CELL RESEARCH SUPPORTER: Good afternoon. My name is Daffney Thomas. This is my beautiful 4-1/2-year-old Elisa and my husband Bruce. Elisa was diagnosed with Rett Syndrome in October of 2000. We are here on behalf of the Rett Syndrome Research Foundation.

Rett Syndrome is a devastating neurodevelopmental disorder. It afflicts one out of every 10,000 girls born. These girls are born healthy, develop normally until about 16 -- six to 18 months of age, when their disabilities begin to emerge.

Elisa walks with difficulty, falls easily. Fifty percent of the girls never walk. Elisa is unable to feed herself, color with crayons like other 4-year-olds, dress and undress herself or tell what she wants. Manifestations of Rett Syndrome include a loss of communication with an inability to talk, continuous hand collapsing, seizures, disorganized breathing, the use of feeding tubes and scoliosis, to name a few.

I strongly urge the president to support the HIH guidelines for embryonic stem cell research for the following reasons. One, it will help elucidate the neurobiology of Rett Syndrome. Two, stem cells may be crucial in guiding the genetically engineered genes into the brain. And three, the Rett Syndrome brain is structurally normal, though immature. Stem cell transplants may be able to jump-start the brain into action.

In conclusion, President Bush, please don't slam the door on giving Elisa and thousands like her a fighting chance for a better tomorrow. Thank you.

MALONEY: Thank you. Thank you for being here. Thank you so much.

I know we introduced you to Molly and Jackie Singer. Molly and Jackie are 12-year-old twins from Las Vegas, Nevada. Molly was diagnosed with juvenile diabetes at age 4. Her twin Jackie doesn't have the disease. Molly and Jackie have been very active in urging support for stem cell research. They have written many letters to President Bush asking for his support, and have given up their vacation to be here at this press conference. Thank you for coming.

MOLLY SINGER, HAS JUVENILE DIABETES: Thank you. My name is Molly Singer, and this is my twin sister Jackie. Eight years ago, I was diagnosed with juvenile diabetes, and ever since then I worry that my sister will get this terrible disease.

So far, I have had 21,000 shots and 28, 000 finger pokes. At age 5, I had open heart surgery, which made it harder because of my diabetes. Because of all of the problems I've had, I worry about my future and I don't want Jackie or anyone to go through what I've been through. We need to do something to stop this. Please support the NIH guidelines for embryonic stem cell research. Thank you.

CHEN: All right. These are the young faces involved in the campaign of supporters favoring federal guidelines for stem cell research. As you know, this is quite a topic of great debate on Capitol Hill these days. Part of the issue goes to the issue of the pro-life forces and scientific research forces, as they try to consider what should be done about stem cell research opportunities.

Appearing before the reporters on Capitol Hill today, a couple of families presenting their children and saying that they need additional help from the government to try to promote stem cell research to help their children as well. CNN is continuing to follow this controversial debate. We will bring you updates on that.

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