Around 12 babies are born every year with a genetic deletion syndrome called 22q11.

Áine Lawlor and her mother Anne talk to Fiona Tyrrell about life with the syndrome.

Click here to read the article in the Irish Times

This is generally not known as the majority of patients who have a 22q11.2 deletion, which caused their DiGeorge syndrome/VCFS, do not have an affected parent, therefore, the change in their chromosome 22 is a "new mutation" (de novo) in them. Only in about 10% of cases is a parent also affected.

There is nothing that either parent could have done before or during the pregnancy to have prevented the deletion from happening or could have done to have caused the deletion to occur. This is a defect of the human race not of one particular person.

It is vital to understand that this is no-ones' "fault".

The chromosome deletion was present in either the egg or sperm from which the baby was conceived. In other words the baby was destined to be born with the deletion from the instant of conception.