| |  | | | | | | Tom, pictured with Mary, wants to help CdLS people find each other. | | | | Organising a family day at Manchester four years ago got Tom O’Neill involved at the Foundation’s heart. “I wouldn’t say I was co-opted, it was more like being Shanghaied,” he said. After making a very successful job of running the Manchester event, Tom was persuaded to join the Board – and has enjoyed being part of the team ever since. Tom and his wife, Julia, have a 12-year-old CdLS daughter, Mary. Mary was diagnosed within days of her birth. “Shewas very hairy and the doctors were all standing around looking at her,” recalled Tom. “A geneticist came in and identified Cornelia de Lange Syndrome. Of course, we hadn’t heard of it and had no idea what life would have in store for Mary.” Tom and Julia were told about the Foundation and when Mary was just six months old, in October 1990, they went to Blackpool. “The first person I met was Steve Penney who was propping up the bar – it is great that some things don’t change,” said Tom. Makaton Mary and Julia learned Makaton while Mary was still a baby and Tom is convinced it is the best thing they could ever have done. “It meant we could communicate. That removed a lot of the frustrations,” he said. Tom’s employers, British Gas, also sponsored one of Mary’s schoolteachers to learn Makaton so Mary could be helped more in the classroom. An Operations Manager for British Gas, Tom lives in Hale, Cheshire with Julia, Mary and their two other daughters, Josephine, 15 and Catherine, 14. “The Foundation helped Julia and me find other people and find knowledge at what was probably the worst time of our lives. As a Trustee, I want to make sure that it is even easier for people to find each other and the information they need,” said Tom. |
