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Rare disease leaves two Utah sisters in need of marrow transplant

By Ed Yeates | Posted - Dec 15th, 2011 @ 11:59pm

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SALT LAKE CITY -- Inside a room at Primary Children's Medical Center, 8-year-old Natalie Fish is undergoing chemotherapy in preparation for a bone marrow transplant. Meanwhile her 2-year-old sister Alice is at home awaiting her transplant which could happen within the next three or four weeks.

Both girls are victims of an immune disease called "Leaky SCID." SCID stands for Severe Combined Immune Deficiency. Natalie and Alice have a variant of the disease in which their immune system partially developed after birth, but then started attacking itself.

Elisabeth Fish says "not only are our daughters not able to recover from an illness, but their bodies are literally being killed by their own immune systems."

A bone marrow transplant is the only possible cure. Natalie's four year old brother Blair is her donor. He's a perfect match. Alice has an anonymous donor.

Donate to the fish family...
Two accounts* have been set up for the Fish family to help them pay for future accruing costs associated with the lifesaving marrow transplant their daughters need.

Wells Fargo:
Fish Children Donation Fund

Utah Community Credit Union:
2 Fish Marrow Wish Fund

Even after the transplant, both kids will have to stay extremely clean and away from illnesses until the transplant fully takes hold. That may take up to two years.

For at least the first 100 days following the transplants, the girls won't be able to eat certain hard-to-wash foods. Everything surrounding them must be thoroughly cleaned.

Their father, Tyler Fish, says they have to sterilize everything "from doorknobs to shampooing carpets, to sterilizing little individualized food packets we open for them: Everything has a red flag."

Elizabeth and Tyler have made financial and psychological sacrifices to keep their daughters healthy. Both children have been in and out of the hospital numerous times, fighting for their lives from routine infections that normal bodies can handle.

Alice Fish will undergo a bone marrow transplant thanks to the help of an anonymous donor in just a few weeks. She has "Leaky SCID," a rare autoimmune disease that turns the body's defenses against itself. Only a few people per year get it in the United States.

"When Natalie asks why do I have to have this body and we really don't have a great answer, we must tell her that she's a very special girl and someday we'll know why you're sick all the time," said Elisabeth.

Though the transplant is risky -- especially for Natalie because she has had the disease for several years -- the success rate at Primary Children's approaches 100 percent for SCID patients.

"If the transplants take hold, we would not expect the disease to come back. Eventually, they should have a normal immune system," according to Dr. John Bohnsack at Primary Children's.

But until then, the parents must watch and monitor seven days a week. Tyler has even quit his job to help take care of the kids. He says that decision was made a long time ago. They decided, he says "to do whatever it took to insure the safety and health of our children, and making that decision wasn't really hard because we already committed to that a long time ago."

Elisabeth is now a crusader for legislation in Utah that would mandate an inexpensive SCID test at birth. Had that happened with the two girls, they would never have experienced the disease because they would have had a bone marrow transplant during infancy.

The couple's third daughter, Evie, may have this disease as well. They won't know if she has it until the genetic testing is complete.

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* has not verified the accuracy of the information provided with respect to the accounts nor does assure that the monies deposited to the accounts will be applied for the benefit of the persons named as beneficiaries. If you are considering a deposit to the accounts you should consult your own advisors and otherwise proceed at your own risk.


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