August 12th 2012 there should have been a birthday party in my family. Instead we thought about our daughter Shelley whose birthday party it would have been. There was no celebration because Shelley, born on August 12th 1981 was dead. She died 24th December1982 of Tay Sachs disease.

A disease that Jewish communities in Israel and America had been tested for to see if they were carriers since the mid 60s. We all know the figures now, 1 in 25 Ashkenazi descent people are carriers of this disease and if two carriers produce a baby there is a 1 in 4 chance the baby will have Tay Sachs. Prenatal testing is available from 6 weeks of pregnancy.

In 1966 the Chief Rabbi Jakobovits was asked to introduce screening for this disorder to the Jewish community but decided against it on the 'grounds of cost benefits as only 2-3 Jewish children die each year from it' and 'the mass panic and neurosis it would cause'. This from a man considered a leader in Jewish medical ethics. In 1982 when publicity surrounded the birth and death of my daughter, many families came forward to say they had lost one or two children to this terrible disease and all the rabbis said was that it was B’SHED {G-ds will} I am sure G-d will not let a baby die like this and the pain and suffering to the families that goes with it.

I set up the Tay Sachs and Allied Diseases Association in 1983 helped by National Tay Sachs Association USA, and ladies from the League of Jewish Women to alert the community of this disease and encourage screenings in synagogues and schools etc. Sir Michael Sobell and Rabbi Toledano agreed to be Patrons of the charity. Funds were obviously needed for leaflets etc and after meeting doctors from Guys Hospital they agreed to test blood samples from screenings. As well as screenings for Tay Sachs Disease, we also counselled affected families and provided equipment to the babies. The Royal National Institute for the Blind, at our request, assisted the parents of affected babies, in coming to terms with the impending blindness, which is another symptom of the disease.

Soon more money was wanted by Guy’s Hospital for new machinery to test the samples, so an appeal was made to the wealthier members of the community for help.

Not one of these so-called pillars of the community helped. It was as if an embargo was put on helping us and therefore the community.

We gave thousands of pounds to Guys Hospital raised by 'people power' from quiz nights, charity shop and donations. Some groups raised money supposedly for the Association but never passed it on. Some doctors started charging people to test their families, something I was always against.

Eventually National Health Service officials asked me to meet with them due to the large numbers of people coming forward for screening.

They told me that although we had given thousands of pounds to pay staff etc they felt that “if the Jewish people wanted Tay Sachs testing they should pay for it”. I explained that as an ethnic race we are the same as West Indian and Mediterranean people who have their own particular disorders and are tested freely on the National Health. If the Health Service insisted on payments I would go straight to Fleet Street and accuse these officials of racial discrimination. They then agreed that if the community wanted Tay Sachs testing it would be available free of charge.

Why then are we picked out now and being told we will no longer be given free testing which we are entitled to. Why do Jewish people go to private clinics and pay for screening for Jewish disorders when the tests are available free of charge on the Health Service.

Jewish Care must take over education and screenings in schools etc for Tay Sachs and the other associated diseases particular to our people. All to often we raise funds for different Jewish charities. It seems that it’s always the same “good causes” that attract the biggest fundraisers. It is about time that we looked after the generations to come!

Our rabbis seeing couples prior to marriages must distribute information on these disorders.

Alan Harris
Founder and Chairman Tay Sachs & Allied Diseases Association.