BONNIE DAVIS cuddles her son Adam, 2½, just weeks before his death from Tay-Sachs disease in 2001.
Senate designates September to raise awareness of Tay-Sachs
By Deborah Moon
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On July 7, the U.S. Senate passed Senate Resolution 594 designating September 2008 as National Tay-Sachs Awareness Month.
Portlander Bonnie Davis, whose first son Adam died of the disease in 2001 at age 2½, wants to be sure Oregonians get the message.
No treatment or cure exists for Tay-Sachs disease, a genetic disorder more common among Ashkenazi Jews than in the general population. The disease is a progressive neurological disorder that is usually fatal by age 5, though some people with late onset Tay-Sachs can live a long life but be severely disabled due to deteriorating speech, mobility and sometimes mental health, according to the National Tay-Sachs and Allied Diseases Association.
“People just don’t know enough about it,” said Davis, who serves on NTSAD family support and development committees. “It’s not just a Jewish disease, and people who are Jewish think it doesn’t exist anymore because they don’t hear about it enough.”
Dr. Robert Steiner, chief of the division of metabolism and an associate professor of pediatrics, molecular and medical genetics at Oregon Health and Science University, couldn’t agree more.
“I have personally seen a baby born unexpectedly with Tay-Sachs to an Ashkenazi Jewish couple recently in my practice,” said Steiner in an e-mail interview. “Ashkenazi Jewish couples have a higher risk of having a child with Tay-Sachs than the general population. Lack of awareness can lead to the birth of a child with Tay-Sachs to a Jewish couple without the couple even having been aware that they were at risk, which is a tragedy.”
Tay-Sachs is a recessive genetic disorder, which means if both parents are carriers, statistically one in four of their children will have the disease and two will be carriers. A simple, inexpensive blood test can determine if an individual is a carrier.
“Knowledge of the risks and what can be done to lower the risks or to prepare for the birth of an affected child can be very useful to Jewish couples,” Steiner said.
After the death of her son Adam, Davis had a corionic villi sampling test done at 12 weeks in her subsequent pregnancies to determine if the fetus was healthy. Amniocentesis done at 16 weeks into a pregnancy also can test for Tay-Sachs. Davis and her husband Barry now have two healthy children: Jeremy, 6, and Jordan, 2.
“It’s a very long first trimester when you’re waiting to learn,” said Davis. “We would not have had another child with Tay-Sachs. We wouldn’t do that to another child or our families.”
In combining Tay-Sachs Awareness Month with both her committee roles at NTSAD, Davis is planning a friend-raising meeting in September. She will host a meeting at her home sometime next month for those who are willing to help her plan a fund-raiser next spring or summer.
The development committee on which she serves is in charge of helping people plan events. The family services committee plans NTSAD’s annual family conference, matches families with a new diagnosis with mentors, and provides calling cards and funds to ship no longer needed equipment to new families.
“I would like to help raise money to help with family services,” she said. “So much goes into research…my personal focus is on family services.”
“There is no cure and no treatment, so families need to feel supported and have ways to learn about their child’s illness,” she said.
Davis said volunteering with NTSAD and serving as a mentor are ways she can help keep her son’s memory alive and to help others going through the same thing.
“You feel so alone and like no one else could know what it is like,” said Davis. “Unfortunately, I know.”
For information on the September friend-raising event, e-mail Davis at Bonnie.226@comcast.net. For more information on Tay-Sachs, visit www.ntsad.org.
