My name is Lindsey Freeman – I know two children that were born with a genetic disease – one is my son, and the other was my nephew’s son. It has made me appreciate the profound impact these diseases can have, and the critical importance of ongoing medical research to achieve previously-unimaginable positive outcomes.

My son, Richard, was diagnosed with cystic fibrosis and was in and out of hospitals leading up to the diagnosis. The shock and sadness of learning that our dearly loved little boy was unlikely to live to adulthood and would be unwell and vulnerable all his short life, was unbearable. We grieved the loss of the hopes parents have for a child and their future.

At that time there was no genetic testing for carriers of the cystic fibrosis gene, and we were advised that there was a very high risk that any subsequent children of ours would have cystic fibrosis too. So, we opted not to have more children – another blow. Now, thanks to research, that situation has changed, and the risk can be managed.

I’ve seen what can be achieved by medical research in relation to identifying the gene for cystic fibrosis and its early diagnosis and treatment. But also, I have seen the great need for research to enable better and earlier diagnosis and treatment to save and improve the lives of the many children with as-yet incurable genetic disorders.

Whatever I can contribute towards funding that research seems to me to be a very worthwhile legacy, and that’s why I’m leaving a gift in my Will.