Mother organizes project in memory of her daughter
Rachel Davis of East Huntingdon Township has chosen Mother’s Day to announce a project in memory of her daughter, Jessica, who died from complications of Progeria in 1991.
She plans to raise money to buy gifts for children who have the fatal disorder and present them at the annual “Progeria Reunion” in Orlando, Florida in June.
The name “Progeria” is derived from Greek words meaning “prematurely old.” Progeria is rare, seen in only one out of 8 million newborns. Currently, there are only 40 children worldwide afflicted with the disorder.
The genetic disorder causes children to age rapidly, approximately eight to 10 years for every year of life. The life expectancy for children with the disorder is 14 to 16 years.
Jessica passed away two days before her seventh birthday.
“She’s still so much a part of our lives,” says Davis.
Davis says holidays, like Mother’s Day, are especially hard for her since she misses her daughter even more.
She chose Mother’s Day to announce the project to reach out to other mothers in the community who may be missing deceased children and would like to send a gesture of love to another child in their memory.
Davis, an Avon sales representative, selected Avon’s “Rory the Patriotic Lion” as the gift for the
SProgeria children. The plush lion dressed in red, white and blue recites the Pledge of Allegiance and sings “America the Beautiful.” In light of Sept. 11 he will be a meaningful gift to American children, as well as to children attending the reunion from around the world.
Davis’ goal is 32 lions, one for each child who is planning to attend the reunion.
People can help in two ways: by either purchasing a lion for a Progeria child or buying a lion with the profits going toward the project.
Davis will have those who donate a lion write their name and the name of the person the gift honors or memorializes on a paper cut-out resembling “Rory” the lion. Donor names will be displayed at the Davis’ business, Sam’s Gas and Grocery on Scottdale-Smithton Road.
Annual Progeria reunions are sponsored by the Sunshine Foundation, a dream-granting organization for chronically and terminally ill children founded in 1976, by former Philadelphia police officer Bill Sample.
The Sunshine Foundation granted a dream of a Progeria child from South Africa in 1981. During his family’s visit to the United States, three other children suffering with Progeria and their families met them, and the group began corresponding with the Sunshine Foundation.
In 1982, the first Progeria reunion was held in the Pocono Mountains of Pennsylvania.
The foundation announces that the 19th annual reunion will be held from June 21-26 in Orlando, Fla.
Donnie and Rachel Davis and their daughter Alicia have continued to attend the reunions each year after Jessica’s death, working as volunteers to help families of Progeria children during the event.
Davis says many families don’t return to the reunions once their child has passed away, but for her family, the reunions are “therapy.”
Alicia, 8, who never met her sister Jessica, says she enjoys the reunions because, “I get to see a little bit of my sister” through the other children there.
One of their duties as volunteers is helping with the event’s farewell party, which this year has a “Mardi Gras” theme, where the family will present the gifts.
To donate a lion or purchase a lion to raise funds for Progeria children, stop in at Sam’s Gas and Grocery (credit cards accepted), call 724-887-0850, or send a check to Rachel Davis, R.D.1, Box 331, Scottdale, Pa. 15683. The cost for one “Rory” lion (plus tax) is $21.20.