When Natalie asks, 'Why do I have this body?' we really don't have a great answer. We simply tell her that she's a very special girl and someday will fully understand why she was sick all the time.
SALT LAKE CITY — A rare disease that usually afflicts only two kids per year in the United States is forging an unusual attack on one Utah family.
Natalie and Alice Fish are both victims of an immune disease called Leaky SCID. SCID is an acronym for Severe Combined Immune Deficiency. The girls have an unusual variant of the disorder in which their immune system partially developed after birth, but then began attacking itself.
"Not only are our daughters not able to fight off routine illnesses," Elisabeth Fisher explained, "but their bodies are literally being killed by their own immune systems."
Only 1 in 40,000 people are carriers for leaky SCID, and a child is affected only when both parents carry the gene mutation. Even then, there's only a 25 percent chance one of their children will get the disease.
But for Tyler and Elisabeth Fish, they not only have two afflicted children, but a third newborn child, Evie, might have it as well. Doctors won't know for sure until genetic testing is completed.
A bone marrow transplant is the only possible cure for the two girls now diagnosed with SCID. Eight-year-old Natalie is preparing for her bone marrow transplant at Primary Children's Medical Center. Chemotherapy will kill off the abnormal cells. When the villains have been eliminated, bone marrow cells from her healthy 4-year-old brother, Blair, will be injected into her body, hopefully restoring a new and normally functioning immune system.
Meanwhile, 2-year-old Alice remains at home in Highland awaiting a transplant sometime over the next three to four weeks from an anonymous donor.
After the transplants, both kids will have to stay super clean and away from infections until the transplants fully take hold.
That could take up to two years.
For at least the first 100 days following transplantation, the girls won't be able to eat certain fruits or vegetables that are hard to wash. Their father, Tyler, says "From doorknobs to shampooing carpets, to sterilizing little individualized food packets we have to open for them — everything is a red flag."
Elisabeth and Tyler have made financial and psychological sacrifices trying to keep their daughters healthy. Both children have been in and out of hospitals numerous times fighting for their lives from routine infections our bodies normally handle. In fact, the bone marrow transplant is riskier for Natalie because she's older and has been sicker, off and on, longer than her 2-year-old sister.
"When Natalie asks, 'Why do I have this body?' we really don't have a great answer," Elisabeth said. "We simply tell her that she's a very special girl and someday will fully understand why she was sick all the time."
She says the hardest thing for her "has been watching her children suffer so much and not being able to do much about it."
Though bone marrow transplants are risky in general — the success rate at Primary Children's Medical Center approaches 100 percent for SCID patients. According to Dr. John Bohnsack at Primary, "If the transplants succeed, we would not expect the disease to come back. They should have a normal immune system. We have many long survivors from bone marrow transplants even from this type of disorder."
But until the immune systems are on the mend and restored, Natalie and Alice's parents must watch and monitor them seven days a week. Tyler has even quit working to help take care of the kids for "however long it takes," he said.
"We made that decision a long time ago. We decided to do whatever it takes to insure the safety and health of our children."
"We have a lot to be thankful for — more than not — and a big thing is the support we get from a lot of people and from friends and family," Elisabeth said. "You have an easier time getting through this when you have a smile on your face and when you tell yourself that life is good no matter what happens."
Because of difficulty paying bills, the Fish family was living with Elisabeth's parents. But now that the girls will have to live in isolation while recovering from the transplants, they've moved into another newer home while the owners there are serving an LDS mission in Peru.
"We're tending the house and don't have to pay much rent," Tyler explained. "We wouldn't be able to focus on our children without the wonderful help from family and friends, and even people we've never met."
Two accounts have been set up for the Fish family to help them pay for future accruing costs associated with the lifesaving marrow transplants their daughters need. There's an account at Wells Fargo under Fish Children Donation Fund, and at Utah Community Credit Union, an account has been set up under 2 Fish Marrow Wish Fund.
Elisabeth is now crusading for legislation in Utah that would mandate an inexpensive SCID test at birth. Though it's a rare disease, had that happened the two girls would have had a rapid recovering bone marrow transplant immediately after they were born.
"The two girls would never have experienced the disease," she said.