Parents raise awareness of disease that took their child

November 29, 2006|By Sandy Alexander | Sandy Alexander,sun reporter

Rare, degenerative Tay-Sachs disease stole Conner Hopf's ability to see and hear and, eventually, to move before he died quietly at home Sunday, two months before his second birthday.

Conner's family and friends will remember his short life and his bright smile today at a Mass at St. Augustine Roman Catholic Church in Elkridge, followed by a gathering at the family's Ellicott City home.

Then his parents, Desiree and Carl Hopf, say they will continue the public education efforts that their little boy inspired.

"We've raised awareness among many people, encouraged many people to get screened," Desiree Hopf said yesterday. "We're certainly nowhere near finished."

The Hopfs started a foundation called Conner's Way to raise funds and share information about the disease, which affects the central nervous system; there are no effective treatments.

Supporters of Conner's Way, including Gov. Robert L. Ehrlich Jr., have been wearing blue rubber bracelets to promote the cause. The family is planning a couple of fundraisers in the coming months, and would like to arrange community screenings next year.

Desiree Hopf has also been invited to speak next year to students at University of Maryland School of Medicine. Patient and family stories are a common part of increasing students' understanding and empathy, said Miriam Blitzer, a professor and head of the division of human genetics in the department of pediatrics.

Desiree Hopf "is so committed to her cause, we felt one of the most important things for her and the Conner's Way Foundation is to be able to share her story," Blitzer said.

The genetic mutation that causes Tay-Sachs is found most often in descendants of Central and Eastern European Jews, Blitzer said, but cases occur in all cultural and ethnic groups. If both parents carry the mutation, their children have a 25 percent chance of being born with the illness.

At least 12 to 15 cases of infantile Tay-Sachs are diagnosed in the United States every year, according to the National Tay-Sachs and Allied Diseases Association. A majority of those cases are now found in non-Jewish families in which members were not aware of the disease and were not encouraged to be tested.

Such was the case for the Hopfs. Desiree Hopf said they were "stunned" by the diagnosis.

She said it took time and support, but she learned to embrace each day with her son.

"He was just such a happy boy," she said. "We did whatever we could to make sure he was home with us, to make sure he could live his life to the fullest. ... I held him all the time, hugged him, kissed him - whatever we could do."

Hopf said Conner's death is devastating but that her family is comforted by her healthy 3 1/2 -year-old son, Brenden, and committed to their efforts to raise awareness about Tay-Sachs.

"It's our way to honor our son and continue the legacy," she said, " ... and potentially save another family from this."

sandy.alexander@baltsun.com

The Mass begins at 4:30 p.m. today at St. Augustine, 5976 Old Washington Road, followed by a gathering at the family's home, 7746 Rockburn Drive, Ellicott City. Foundation information can be found at connersway.com.

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