Lady Lindy Kilmaine


Our son John was diagnosed with TS at the age of five months old in 1983 and shortly after that we got in touch with the TSA. My late husband John became heavily involved with the TSA and was, for many years, a member of the committee. We both thought it was an excellent organisation.

Sadly my husband passed away in January 2012 and on his deathbed asked me to sell a family painting and named four charities he wished to benefit from the sale, the TSA being one of them. To everyone's astonishment the painting sold for a mouthwatering amount of money so I was able to give a substantial donation to the TSA and the money is being used for research.
We have always been amazed at the progress that has been made into the research of this complicated disease and we have hugely benefitted from John, who is now 34, going to the TS Clinic in Bath for the past 22 yrs. Not so long ago he gave his sister, Alice, away on her wedding day.

Of course, one hopes for a cure in the future and perhaps one day it will happen. Recently my daughter Alice gave birth to a healthy son, after tests revealed she did not have the TSC genes. For that alone I could not be more grateful to the TSA for all their research and for engaging with similar organisations throughout the world. Alice lives in New Zealand and was able to see a geneticist there who liaised with Julian Sampson in the UK.