Craig Hamilton read this tribute to Anita Macaulay on behalf of the Jennifer Trust at Anita's funeral on 22nd May 2006.
On behalf of the Jennifer Trust I would like to share some of my personal memories of Anita with you.
Last January at a committee meeting, with Anita's dear friend Heather at my side, I had the honour of presenting an Angel Fund Star to Anita in memory of her darling daughter Jennifer. I give thanks today that that moment last January gave me the chance to thank Anita for all she had done for my family and assure her, as I did when I handed over the Star, that Jennifer could never be forgotten, for it was through Jennifer we had all come together.
I have to go back to July 1988 for the start of my family's journey with Anita and the Jennifer Trust.
In common with so many, my family's involvement with SMA came literally out of the blue when my baby son Scott was diagnosed with Werdnig Hoffman's disease or Spinal Muscular Atrophy Type 1. I can still remember sitting there, tears running down my face, hearing the consultant telling me that Scott was terminally ill. "This condition is very rare" .. "There is no support group" .. "There is no cure and virtually no research into the condition" he said. The consultant's words gave little hope. Lynn and I felt very alone. We wanted answers "Would Scott's death be painful? Would his brother Mark, aged 4, who adored his little brother, cope with losing Scott? How would we cope?"
When I eventually did learn about the Jennifer Trust, the first person I spoke to on the phone was Anita's dad Ron. I needed somebody to listen and that person was Ron.
He came over on the phone as an incredibly kind and caring man. He listened and then told me everything would be all right. He pointed out that his daughter Anita knew more about Werdnig Hoffman's disease than anyone else - how right he was.
A day later Anita phoned me, a call I will never forget. She reassured me that Scott's death would be peaceful as Jennifer's had been. She made me believe that Mark would come through the death of his little brother as had the older brothers and sisters of other families she knew in the Trust. My thoughts were, this person cares, this person understands.
Scott died, aged 4 months, in November 1988. We had a daughter, Karen, two years later. She too sadly died of S.M.A. Type 1 early in 1991, aged 6 weeks. I need hardly tell you that Anita was there, always available, at the end of the phone throughout these difficult times. 6 weeks after the death of Karen, Lynn and I made our first trip to Stratford to take part in the Contact Family Training Weekend. We were of course still very raw so soon after the death of Karen but I have never felt safer, mixing with so many who like Anita were able to support and encourage.
One of Anita's finest hours, and there have been so many, came in 1995 when the Trust celebrated its 10th anniversary with a remembrance service here in this church. At one point in the service, the names of all those lost to S.M.A. were read out. The list seemed to go on and on. So many names, yes and so much sadness. However, if it had not been for Anita, the loved ones of these whose names were read out would never have been able to come together in friendship and understanding. The names read out would have been gathering dust in doctors' files and hospital files all over the UK and beyond, never to be brought together. Thanks to Anita, the children and adults on that list were being honoured and remembered together as one big family.
That service took place 11 years ago - how many of our loved ones have been added to the list in that time - or put it another way - how many families have been supported and understood in their time of need - how many rescued from the isolation which devastating news can bring.
The Annual Conference too brings together families who have so much in common. It is not easy, as you can imagine, for the dads to stand in a pub and tell people about children they've loved and miss so much. Many's the time at conference however I've been shown by the dads a picture of their much loved children, now gone. We then invariably talk about football, with me trying in vain to convince everyone that Scottish football is not that bad.
One of the most wonderful sights at Conference is to see all of the children, some with S.M.A., some not, setting out on the trip with Dave Brown - all excited and friends together.
As the charity has grown, so has conference. And yes, members come to conference to hear of the latest research from the world-renowned experts in the field of S.M.A., but also to see Anita. You would hear first timers to conference asking "Which one's Anita? Where is Anita?" And yes she would find time to speak to them.
Clearly Anita's life has not only touched the lives of the Type 1 families. I contacted Ross Thomson, who has S.M.A. Type 2, for his thoughts on Anita and the Trust. He told me last week -
"The Jennifer Trust has supported me through every stage of my life by always being there in difficult situations to advise and support me. They gave me a more positive outlook on life compared to what the doctors told me - it was as if there was a light at the end of the tunnel and life was more worthwhile. Thank you Anita". Words echoed by all here, I'm sure.
So many of the members who have S.M.A. are achieving great things in life, doing well at school and university, holding down demanding jobs and inspiring those who follow in their footsteps.
Anita was intelligent, articulate and had the common touch. One of her greatest strengths was her ability to fit in, whatever the company. She bridged the gap between the professors, the scientists and the ordinary families effortlessly. She was the master of her brief, her knowledge of, for example, the charity world, fundraising, research into S.M.A. in fact any issue surrounding S.M.A., unsurpassed.
As Chief Executive of the Trust, Anita was of course formidable - a leader in every sense. A few weeks ago all trustees, including me, received an e-mail which asked -
"Are you one of the only three trustees who has completed the questionnaire I asked you all to do?"
I remember saying to Lynn "Oh gosh!" or words to that effect, and making sure I was the fourth to fill it out - within 5 minutes of seeing the e-mail.
Anita knew I was a proud Scotsman. At committee meetings she would invariably look at me and say "I know what you're going to ask - you're going to ask where Scotland comes into this subject, aren't you?" She never said England when she meant Britain. She always said British, not English - she translated for the rest of the office staff the messages I left on the answering machine. You know she never even laughed at Scottish football! She was a true Unionist, meaning that the Trust was truly a UK Charity, truly a National Charity.
Her political party was of course the Conservative Party. Apologies to the councillors who are here, but I once told her on the phone that she was the only Conservative I would ever vote for. I'm not sure she understood just what a compliment I was paying her, or that she fully appreciated the compliment.
Anita was a fighter - could anyone here think of anybody better to fight for the underdog on your local council? Woe betide anyone who did not take disability rights seriously when Anita was around.
As you all know, Anita cared passionately about the families. I would go to conference and there unfailingly would be pictures of Scott and Karen, and many of the other children on the pin-board. For years Mark received a birthday card from the Trust which he called Scott's birthday card. When Lynn and I couldn't make it to the conference, two balloons would be tied together by Anita or Annabel and released in memory of the children.
When my daugher Rachel was born in 1993, free from S.M.A., I'm told that Anita and Heather danced up and down on the office floor - you can't imagine how that story inspires me. I was speaking to a Type 1 family recently who had been visited in Yorkhill Sick Childrens Hospital in Glasgow by Anita. They said all their worries seemed to disappear and were so pleased Anita found the time to visit.
Just over 2 weeks ago Anita sat in the Royal Box at the Albert Hall with Heather as guests of the Keep Fit Association. How they both deserved that accolade for their outstanding efforts for the Jennifer Trust.
That was the weekend of the Contact Network Training Weekend and Anita came over at night to see us all. I sat and chatted to her for over half an hour. We were both in reflective mood - Anita told me what Heather meant to the Trust, she spoke of how much she valued Annabel's friendship, of how she thought she now had the best staff team she had ever had, how valuable Keith was to the Trust. She told me how her mum and dad were doing and we both boasted about the achievements of our children.
She was so proud of Stuart. Be assured Stuart that your mum's numerous friends in the Trust are your friends. As she was proud of you, I'm sure you are proud of all she has achieved. Your mum was the Jennifer Trust, and like so many here, I pledge to continue her work until there is a cure.
Truly special people cannot be replaced but their legacy lives on. I suspect it will take an army of people to do the work Anita did, but rest assured, the work will go on.
Pam and Ron, Clive, Stephanie and Stuart - on behalf of the Jennifer Trust I thank you for Anita's work, for her support when times were hardest, for her optimism, for her friendship. Like so many Type 1 families I pay tribute to her for keeping the names of our children alive and for giving purpose to their short lives.
We all know she is with Jennifer now, but not only with Jennifer, but with all the other children. And what is certain is she will know all their names. | 
