Family continues fight against progeria
Jessica Davis was a typical 6-year-old girl — she loved Disney World and Barbie dolls, but found school "boring."
Jessica was different from other girls. Jessica and her parents knew she would not live a long life. Born with the genetic disease Hutchinson-Gilford Progeria, a rare disease that causes a child's body to age rapidly, Jessica baffled local doctors.
Finally diagnosed by a California doctor because of a urine test when she was nearly 3 years old, Jessica traveled often to New York City and Pittsburgh to meet with more doctors who worked to help keep her alive. But, in March 1991, after suffering a massive heart attack, Jessica died just days before her seventh birthday.
Her mother, Rachel Davis, has not forgotten her first child who was taken away too soon. As an Avon representative she is selling Rory the Patriotic Lion stuffed animals to benefit the Sunshine Foundation, a Philadelphia-based organization aimed at making the dreams of chronically and terminally ill children come true. The organization helped Jessica and continues to help Rachel and her husband, Donald.
"The Sunshine Foundation is like therapy for us, and I think we can help the other parents deal with this situation because we've lived with a child with progeria," Rachel Davis said.
"That first year after she died, no one wanted us to talk about her, but it was therapy for us," she said. "Now we talk about her all the time.
"If Jessica taught us one thing, it was that you can't waste time. You have to live every day to the fullest."
The lions sell for $21.20 each. Buyers can keep them or donate them back to the foundation. Rachel needs 32 to take to the Sunshine Foundation Progeria Reunion for each child expected to attend. She has sold 25 and nearly 15 have been donated back to the foundation. If Davis receives more than 32 contributions, she will give the extras to other Sunshine Foundation kids with chronic or terminal illnesses.
When Jessica was born doctors knew something was wrong. Like most children with the disease, she was misdiagnosed, according to her mother. By the time she 2 1/2, her skin grew increasingly transparent and she began to lose her hair. Jessica was aging, but her body wasn't growing. Finally, a doctor was able to diagnose the problem, and the family met Dr. W. Ted Brown of the North Shore University Hospital in Long Island, N.Y. He was recommended by the Sunshine Foundation.
Brown started Jessica on a growth hormone and her parents regulated her diet so she could start to grow and gain weight. "She was a normal little kid — she liked McDonald's french fries. It was really hard to put a little kid on a diet," Davis said. Jessica also had to drink Ensure, a liquid meal, for necessary vitamins and minerals.
One doctor told Rachel Davis, "'Take your child home, enjoy her and watch her die.' I'll never forget those words," Davis said. "I refused to let that happen. I wanted to do everything I possibly could for her."
Eventually, they began to participate in the activities that Sunshine offered, including annual reunions each June. When Jessica was 4 years old, Rachel and her sister-in-law traveled to New York for their first progeria reunion.
Two years later, Donald Davis joined his family at the organization's Disney location in Florida. The reunions are a way to bring together all children with progeria to see they aren't alone. It also offered the parents an opportunity to help one another. The Davises, with their second child, Alicia, still attend the annual event.
The Sunshine Foundation began hosting reunions 21 years ago. The first was held in the Pocono Mountains of Pennsylvania. Since then, the organization has formed its own place near Disney World where the children and their families can stay.
Jessica had flat feet and had trouble walking at times. Doctors couldn't give the Davises an answer, but another parent told them about shoe inserts. They worked, and the Davises realized that they too could help the other parents.
Sixteen children went to the first reunion that Donald Davis attended. Now, the number of known cases of progeria has risen to nearly 40. Approximately 35 of these patients are expected to attend this year's reunion in Florida.
The Davis family will again be among those who gather.
Eight-year-old Alicia Davis never met her older sister.
But the reunions help Alicia know a part of her sister. Two children with progeria who knew Jessica and still survive are one link.
Each year, when the Davis family portrait is taken, a picture of Jessica is included. A cupboard in her parents' bedroom is filled with gifts to Jessica and things she made. A kindergarten class in Ohio once wrote her letters, and they are neatly packed away. Jessica's tiny clothes, most custom-made by relatives, are under her parents' bed. KDKA-TV once followed Jessica through a Sunshine Foundation reunion. The videos are placed on her parents' bedroom dresser. Pictures of Jessica and Alicia line the walls and end tables.
