Published: February 26, 2006 10:58 pm         

Couple creates Web site for families facing aplastic anemia

PINEVILLE — Jeffrey Ott made his 13-year-old daughter, Stephanie, a promise: He would help other children suffering from aplastic anemia, the disease that had caused her untold suffering and, in the end, led to her death.

“Children will teach you things if you listen to them,” Ott said. “She definitely changed me.”

Stephanie asked for the promise one night while he was sitting by her hospital bed.

Jeffrey and Stephanie’s mother, Susan, have worked tirelessly to keep that sacred promise. They’ve used Stephanie’s insurance money as well as their savings that would have paid for her college education to create Stephanie Ott’s Angels for Aplastic Anemia Foundation, which provides financial support for other families facing the same nightmare.

He continues to research current treatment options and monitor clinical trials, just as he did when Stephanie needed him.

“When you’re in the hospital, you don’t have access to a computer,” he explained.

So he does the research and provides it to the family. Currently, the Otts are assisting nearly a dozen families.

Susan creates Web sites for the children who are suffering, just as she composed the foundation Web site.

“The kids just eat it up,” he said.

They also buy gifts for the children and offer emotional support to the families, as well as provide them financial assistance through their own foundation and put them in touch with other agencies and foundations that offer help.

“We help the families directly,” Jeffrey emphasized, adding they also make donations to the Make-A-Wish Foundation, St. Jude Children’s Hospital, Ronald McDonald House and the Aplastic Anemia & MDS International Foundation.

At Christmas, union members at Dominion Transmission in Brenton, where Jeffrey is employed, provided more than $4,000 for gift cards for the families being assisted through the foundation.

Aplastic anemia and myelodysplastic syndromes are non-contagious, and often fatal, blood diseases that occur when the bone marrow stops making enough healthy blood cells. Although many of the causes are still unknown, it is believed the diseases can be linked to common toxins and viruses. It can strike any person at any age.

Those who survive face a life-long battle of health issues, Jeffrey explained, from sterility to glaucoma to recurrence of the disease itself.

Aplastic anemia, especially in its initial stages, is often misdiagnosed, Susan explained. Stephanie’s nose bled a lot, but doctors believed it was just allergies. She bruised at the slightest touch to her skin, so teachers and others thought she was being abused.

Stephanie was finally correctly diagnosed in 2001.

“At the time, we had no idea what this was, but over the next two and half years we came to find out this was the beginning of our worst nightmare,” the couple explains on their foundation Web site.

While Stephanie remained on donor lists for a bone marrow transplant match, she developed a sinus infection. Though it is simple to treat in a healthy person, Stephanie could not survive without the strong, healthy marrow of a matching a donor. They used her father’s marrow, but he was only a partial match. It was enough, however, to save Stephanie from this battle.

As with other families facing the same emotional roller-coaster, their elation was short-lived. Less than a month later, Stephanie developed another virus, Adenovirus, which ended her life in May 2004.

They found out from the autopsy that the virus had mutated into a new strain and was using the medication, administered to help Stephanie, against her.

That information is being used to help other children as well, Jeffrey explained, or they would not have agreed to the autopsy.

The first child the Otts helped through their foundation was in a mental ward during their first encounter. The disease and the necessary medications result in severe depression for some children.

Jeffrey talked with the parents and the doctors. Those efforts helped the family put the child on the path to recovery. Shortly afterward, the child had a one-line part in Disney’s “Sky High” and is still “doing fairly well,” Jeffrey noted.

Despite the painful reminders and watching other children die from the same disease, the Otts will not quit.

“It hurts,” he said. “But that hurt makes me drive harder because if we can help one child, one family, then it’s worth it.

“When a family tells us, ‘She had a smile on her face,’ it’s worth it,” he emphasized.

“I’m fighting this disease my way — our way,” Susan said, looking at her husband. “We’re fighting the disease that killed Stephanie. I don’t get tired of that.”

For more information or to provide assistance, the Stephanie Ott’s Angels for Aplastic Anemia Foundation Web site is http://www.freewebs.com/stephaniesangels/.

— E-mail:

mcbrooks@register-herald.com