Baylough-based chairperson of SOFT Ireland to hold local meeting

National charity SOFT Ireland, the support organisation for families of children born with chromosonal disorders, Patau's Syndrome and Edward's Syndrome, will hold its very first meeting in Athlone next week. The current chairperson of the voluntary group is Carmel Reilly from Baylough and she is urging, families, relatives, friends of children born with Patau's Syndrome, also known as Trisomy 13 or Edwards Syndrome, Trisomy 18, to come along to the informal event on Monday, August 30 next in the Athlone Springs Hotel to learn more the chromosonal conditions, SOFT Ireland and its work. The meeting runs from 6.30pm to 8.30pm and is also open to medical professionals with an interest in the area. Involved in SOFT Ireland for a number of years now, Carmel first came into contact with the group after her first child Aoife was born with Edward's Syndrome and only lived for a few hours back in 1993. The Baylough resident is full of praise for SOFT Ireland's help and support in the intervening years as people in the group know and understand exactly what parents and families are going through. Babies have been born with Trisomy 13 and 18 since the beginning of time, she said but it was only in 1960 that Dr Patau and Dr Edwards identified the respective features of the syndromes. In both cases, the syndromes are the result of an extra 13th or 18th chromosome respectively being present in each cell in the body, a situation which means it is quite rare for such a pregnancy to come to full term. The incidence of Trisomy 13 is 1 in 10,000 of all births, while that of Trisomy 18 is about 1 in 4,000 of all births. Carmel Reilly said SOFT Ireland, formed in 1991 families affected by Patau's Syndrome, Edward's Syndrome and related disorders, provide pre-natal diagnosis during the child's life and after the child's passing. Nine out of every ten babies born with Patau's Syndrome or Edwards' Syndrome do not survive beyond their first year. About three out of every ten babies with these conditions will die within the first month. Half will die before they are two months old. But, of the one child in ten who celebrates her first birthday, some will survive into childhood. Occasionally, a child with trisomy 18 will live into their teens and beyond. Usually, girls live longer than boys. SOFT Ireland puts families in contact with one another for support, provides information on the conditions, bereavement counselling, respite assistance, publishing regular newsletters, organising conferences, professional speakers, family days, and maintaining links with other groups. For further information contact SOFT Ireland directly by free phone 1800 213 218, e-mail info@softireland.com or visit the website www.softireland.com. Alternatively, come to the meeting on Monday, August 30. Admission is free, refreshments will be available and all are welcome.