Cord-blood Stem-cell Recipient Celebrates 2nd Birthday: Miracle Cure for Baby, No Murder Required

CNS ^ | 12-28-01 | Sue Kathman

[Notwithstanding]

STEM KID Dec-28-2001 (670 words) xxxn
Stem-cell recipient celebrates second birthday
By Sue Kathman
Catholic News Service

COVINGTON, Ky. (CNS) -- As the debate about embryonic stem-cell research rages on, Anne Rugari wants the world to know about the miraculous research that saved her baby's life without ending the lives of other babies.

Thanks to stem cells obtained from the umbilical cords of newborns, little Gina Rugari was thriving as she celebrated her second birthday Dec. 23. Gina was born with a disease known as Krabbe leukodystrophy, a rare, degenerative enzyme disorder of the central and peripheral nervous system.

Children who inherit the disease lack an important enzyme that is a component of the white matter of the brain, called myelin. This enzyme deficiency produces toxins in the brain, causing myelin loss and neurological symptoms.

The disease is not usually evident until three to six months after birth, when the baby begins to show signs such as extreme irritability and developmental delay or regression. Later symptoms include seizures and unexplainable fevers. Eventually, after progressive deterioration including blindness and deafness, the baby dies before age 2.

Anne and Phil Rugari had a son, Nick, in 1986. Typical of babies born with Krabbe, he developed symptoms and died at age 1. In January 1999, when their other son, Philip, was a sophomore at Covington Catholic High School, he decided to do a biology research paper on the rare disease that had claimed the life of his little brother.

When Anne was pregnant with Gina, she declined prenatal testing but had the baby tested immediately after birth. Gina had the disease, but thanks to the research Philip had done, the Rugaris knew about an experimental cord blood stem-cell transplant that had been performed at Duke University in 1996.

Four days of intense testing at Duke proved that Gina was a good candidate for the transplant, but if her body rejected it, she would die. It was a huge risk with only a 50/50 chance of success, but two other babies had received the transplant by this time, and they had survived.

The family knew that without the procedure Gina would live only about a year, and that she would be very sick during that year. The difficult decision had to be made immediately.

Anne said that Philip was the strongest, insisting that they should do the procedure and that Gina would live. "The Rock," as they began to call him, encouraged his parents every step of the way, as they struggled and cried at the end of each day of grueling testing and treatment.

They decided to proceed, and a match was found. The stem cells from the newborn infant's umbilical cord blood would carry the enzyme Gina was missing. She underwent nine days of chemotherapy to wipe out her immune system so the new cord blood could be infused on day 10, followed by a waiting period to see if her body would accept the new cells. Thankfully, it did.

Anne and Gina stayed at Duke for the next five months, the first three in isolation, since her immune system was immobilized.

At home now, Gina is doing well. She is developmentally behind, possibly because of the chemotherapy or the early days of carrying the disease. Doctors believe she will catch up in time, and she shows no signs of the disease.

More babies with Krabbe have survived since Gina's experience, and scientists are hopeful. Interestingly, only children who have lost an older sibling to the disease are saved, because transplants must take place very soon after birth, and typically there is no reason to test for the disease, which claims the lives of 50 to 60 children annually.

All of the progress on this disease has been made using umbilical cord blood. Duke performs 300 transplants a year for many kinds of metabolic and genetic diseases using cord blood stem cells, and they are experiencing great success. On the other hand, no permanent progress on any disease has been made using stem cells from human embryos.

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[Notwithstanding]

adult-stem-cells-are-where-the-real-progress-is

bump/ping

[Khepera]

Pro-life 1 Pro-death 0

[Notwithstanding]

Bump (p.s. - you need a shorter screen name!!!!!)

[Nora]

Thanks for the ping.

[Notwithstanding]

Seems a real journalist would jump all over this type of story due to 1) human interest and 2) controversy (it debunks the presumptive and in-the-news theory about stem cells) and 3) there is actually something for the journalist to uncover and investigate (is info like this being hushed? by whom?).

Today's "journalists" have no objectivity, however.

]

[JMJ333]

Bttt...and thanks! Good news two days in a row! :)

[Notwithstanding]

The Truth is Good News!!!!! (But you already knew that.)

[Yellow Rose of Texas]

GOD bless these researchers!

[Savage Beast]

A cure for this horrible disease is a miracle. Many more miracles are forthcoming. If cord-blood stem-cell research provides the answers--fine--but, if not, research must not be restricted to cord-blood stem-cells. Stem-cell research should and must continue.

[Notwithstanding]

So sayeth the cannibal, savage beast.

[denydenydeny]

I just want to hear you say, "Hey, that's good news."

Just once, then you can be yourself again.:]

[jwalsh07]

You can give informed consent right now. Donate marrow, a kidney, one of your eyes, half your liver, a testicle or two and any thing else your little heart desires. Let the research go forward!

[Notwithstanding]

You mean harvest tissue from a living human? How gross and inhumane!! What about his rights?

[Notwithstanding]

/sarcasm

[Savage Beast]

In fact, I have offered my marrow and my blood.

[Notwithstanding]

At least you have the option to say "no".

[Brian Kopp DPM]

Stem-cell research should and must continue.

I'm amazed at how some folks will volunteer others for medical research. Embryos are human beings from the moment of conception.

Unless you are willing to be personally torn asunder in the interest of "science," how about refraining from volunteering other human beings, no matter how small, for the same.

[ValerieUSA]

Happy Birthday, Gina!

[JMJ333]

A cure for this horrible disease is a miracle

Not if the cure comes from evil. It is never permissable to benefit from evil, and that's exactly what research from embryonic stem cells is doing.

Harvesting human beings like crops, ripping our their stem cells and disposing of them like garbage for the benefit of the living is a foundational sin--morally abhorent.

Stop promoting the culture of death pushed by atheistic science who sees us as equivalent to animals--or less.