Colin Simpson

October 2007

"It is hard to believe that in this day and age our family had to wait an agonising 9 weeks for the results of Sarah's pathology at a time when we did not know if Sarah had died of a genetic condition."

Angela Butler

February 2007

"It is one year since we lost Nathan - what a terrible year it has been.

As you know we have all undergone extensive cardiac screening.  We now feel that it would have been better if Nathan's heart had been kept rather than just small tissue blocks.  I know this is a horrible thought but we now know that the diagnosis of my husband's condition and also the investigation of our younger son would be aided if they had the whole heart to look at.

We were never asked if Nathan's heart could be kept, but I am sure if we had been asked and given a full explanation about the need for such research we would have agreed.  I would therefore advise any parent who is faced with the terrible tragedy that we have suffered, to consider giving their consent for the heart to be kept for future research - not only for the benefit of their own family, but also to help other parents avoid having to go through what we're going through."