Two area families face more than the fatal disease that threatens their children; they also face the fact that you have probably never heard of it. 

A Rare Fight

The lab technician assumed the machine was broken; there was no way 11-year-old Megan Moring's blood counts were really that low. But they were. It was 1991 and Moring had been sick for weeks with pneumonia. Then she woke up one morning and couldn't feel her legs. Her doctor ordered blood work, and the results, extremely abnormal, alarmed her doctor. But it took two months for the doctors to figure out that Moring had Fanconi Anemia (FA).

FA is a rare and deadly genetic disease that attacks patient's bone marrow, disabling it from making blood. This leaves the patient with lowered numbers of red blood cells, which carry oxygen to the cells; low counts of white cells, which fight off illnesses; and low counts of platelets, which help clot blood. Eventually, all FA patients need a bone marrow transplant, a risky procedure itself due to the high amount of chemotherapy a patient must endure prior to the transplant. Most children with FA do not reach adulthood. Life expectancy is about age 22. Moring is now 20.

Part of this is because doctors know so little about this extremely rare disease. According to the Fanconi Anemia Research Fund, FA affects only 1,000 people worldwide. At least, as far as the researchers know. They suspect that many cases go misdiagnosed. Dr. Gita Massey, a pediatric hematologist oncologist at Virginia Commonwealth University's Medical College of Virginia has seen only five or six FA diagnoses in the past 10 years. Moring has been one of these.

For Moring's mother, Ira Walker, a nurse at MCV for more than 20 years, the diagnosis was a shock. She had dealt with one FA patient and knew a lot about the fatal disease, but didn't expect that Moring's symptoms matched up.

Moring remembers thinking when she was diagnosed, "'I'm going to die.' I felt like everybody was secretive and everybody was sad and crying," she explains, "and I thought, 'This is it, I'm going to die. Why is this happening to me?'"

Big thoughts for an 11-year-old.

Sean McQueen's thoughts remain blessedly small. Sean, 19 months, and his sister, Kelsey, 4, ride around their living room on screeching scooters, Sean carrying French fries that he scatters in varying places.

He was diagnosed with FA in October 1999, when he was 10 months old. Kelsey only understands that Sean doesn't have "healthy blood." So the burden of awareness falls upon his parents, Lorraine and Kevin, residents of the Fan.

As in the case of many FA children, the doctors didn't think of FA right away when they considered Sean's unusual set of symptoms -slow prenatal growth rate, a right thumb which bent inward, one horseshoe-shaped kidney, and an inversion on chromosome 11. It wasn't until Lorraine McQueen tried to wipe off a tiny spot of what she thought was maple syrup and discovered a cafe-au-lait spot on Sean's chin that the puzzle fit together for doctors and the diagnosis was made.

On Oct. 18, "A Friday afternoon — I remember that day well," McQueen says, raising her eyebrows, the McQueens got a letter from the geneticist saying that the symptoms fit for a disease called Fanconi Anemia.

Though the name initially meant nothing to McQueen, after she and her husband looked at some research, she recognized that it was the same disease they had just read about in a Newsweek article a few months before. A family in Oregon, the Frohnmayers, had lost two daughters to FA and had a third daughter diagnosed. McQueen says they had even had a discussion about the Oregon family, saying, "Can you imagine anything worse?"

Now there was no imagining.

For Moring, the reality of her disease hit as she began taking medication, which the doctors tried instead of a bone marrow transplant. Oxymetholone stimulates bone marrow growth, and Prednisone, a steroid, counteracts Oxymetholone's tendency to prematurely close bone ends.

Doctors reminded the family that the medication was not a cure, and that Moring could eventually become immune to it. In the past year, Moring's counts have continued to drop; the medication is no longer working as it should. Moring is in need of a bone marrow transplant. She's been on the active search list for a match for the past three months. Though the list started at 10 potential matches, it is now down to four. Moring, who is black, explains that minorities have a significantly lower chance of finding a match than whites do, because there are far fewer donors. Moring needs to find an African-American match. So she waits for a donor.

But she doesn't wait passively. She has informed people about the need for bone marrow donations. Her family has organized bone marrow drives and she has participated in other blood drives, holding her friends' hands as they donate.

Now, as Moring looks to starting at Old Dominion University this fall, she talks about her future. She wants to work in the health field, perhaps in pediatrics or geriatrics.

Walker has always encouraged her daughter not to let the disease control her life despite fatigue and sometimes deep bone pain and to keep involved in the activities that bring her joy. "I tried to push her," she says. "I think it's been instrumental in letting her know that you cannot sit around and let the disease control you."

The McQueens don't wait passively for the disease to take its toll on Sean either. McQueen speaks optimistically about their situation. "We were lucky to diagnose him as early as we did," she says. The earlier they can begin monitoring his blood counts, the better.

The McQueens are also optimistic because Sean has an extremely rare form of the already rare disease — mosaic. Meaning, he has both healthy and unhealthy blood. McQueen believes there are only two other families in the United States with children with the mosaic form of FA. She says that doctors predict that the healthy blood will eventually take over and kill off the unhealthy blood, but nobody really knows what will happen.

"I've learned to stop guessing," McQueen says. "It's just too hard to predict. We just want to keep him healthy and do what we can do to find out about the disease." Because children with FA are 15,000 times more likely to develop leukemia, the McQueens monitor Sean's exposure to sun and X-rays, and have him on an anti-cancer diet that excludes dairy, wheat and corn.

The McQueens also are actively increasing the research on FA by organizing a fund-raiser for the end of September. The money raised at the casino night and silent auction at the Renaissance will go to the Fanconi Anemia Research Fund, begun by the Frohnmayers. The funds raised will be earmarked for research on mosaic FA.

"I honestly feel that it's going to be OK," McQueen says. Just then, a cry breaks out from a baby in the hallway, where a big sister on a scooter insists, "I already said I was sorry!"

In the Massey Cancer center at MCV, Moring flinches while a nurse draws blood. Another nurse walks in and scolds Moring's boyfriend, Corey — "Boyfriend, you are not doing your job"— for not holding her hand. He moves to the arm of her chair and takes her hand. Walker comes in to check up on her daughter. She fans herself with an envelope and encourages Moring not to cry in front of a little boy with only traces of fuzzy hair in the chair next to Moring.

Moring turns to him, "Would you cry in front of me?" she asks him.

At the back of the room a mother feeds a baby from a bottle while an IV drips into the child's soft skin.

Today, for Moring, there is good news. Her counts are down, but not so far that she'll need a transfusion. Not


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