Hampton child's rare illness rallied family, community
Danette and Randy Frederick never considered their daughter Lizzy's 13-year battle with Cornelia de Lange Syndrome to be a burden.
"Danette and Randy considered it a gift to be able to share their lives with their daughter," said Stacey Trap, Mrs. Frederick's sister.
Elizabeth Sarah "Lizzy" Frederick, of Hampton, died of kidney failure on Thursday, April 12, 2007, at the Forbes Hospice in Oakland. She was 13.
"They wanted Lizzy to improve not for themselves, but for her. They wanted her to be able to live a productive life," Trap said.
"Lizzy was Daddy's little girl," said Danette Frederick. "I always told him that his daughter has him wrapped around her little finger."
Elizabeth Frederick was born May 12, 1993. Doctors diagnosed her 4 months later with Cornelia de Lange Syndrome, a genetic disorder that left her with gastronomical problems and unable to eat or to speak.
"Although Lizzy couldn't speak, her eyes always told you what she wanted," said Elaine Fatla, Danette Frederick's other sister.
The disorder occurs in about one in every 10,000 births. It's been estimated that only 16 people in the Pittsburgh area have been diagnosed with the syndrome.
Besides the love that the parents had for their daughter, the support of family members, neighbors and the congregation of the Glenshaw Presbyterian Church in Shaler sustained them during their daughter's surgeries and hospitalization.
"Helping with Lizzy was a family affair," Trap said. "There was always a family member, especially Lizzy's brother Will and sister Claire, available when Danette and Randy needed things to be done around the house or be a baby sitter and be available when they took Lizzy for her doctor appointments."
"When we were going through these difficult times, the women of our church provided us with two hot meals every week," Mrs. Frederick said.
"And the women of our church made it possible for Lizzy and our daughter Claire to attend Logos, the after-school program at the church," she added.
Danette Frederick considered the time that her daughter spent at the Watson Institute in Sewickley as being in Lizzy's home away from home.
"Lizzy enjoyed the independence of being in the congenial atmosphere of the institute and having a staff of teachers and professionals that loved her and cared for her" she said.
In 2008, as they have been doing for the past seven years, a group of neighbors and friends will hold another round of "The Lizzy," a golf tournament to raise funds for the national Cornelia de Lange Syndrome Foundation.
"Randy and I and our children have gone through some most difficult times," Mrs. Frederick said. "But when you have the support, care and overwhelming love of so many people, it's difficult to despair."
Elizabeth Frederick is survived by her parents, Danette and W. Randall "Randy" Frederick; siblings, Claire, a third-grader at Central Elementary in Hampton, and Will, a senior at Shady Side Academy on Fox Chapel; and her grandparents, Sally and Dan Kotch, of Shaler, and Norma "GG" Frederick of Observatory Hill, North Side.
Visitation with the Frederick family will be from 2 to 4 and 7 to 9 p.m. today and Sunday at the Bock Funeral Home Ltd., 1500 Mt. Royal Blvd., Shaler.
A service to celebrate Lizzy will be at 11 a.m. Monday in Glenshaw Presbyterian Church, Glen Avenue.