Registered Charity Number (RCN) 20027094
Charity Reference Number (CHY) 10554
The SUPPORT ORGANISATION FOR TRISOMY (S.O.F.T.) was founded in Ireland in 1991 as a voluntary group dedicated to providing support for families of children diagnosed and born with the chromosomal disorders – Patau’s Syndrome or Trisomy l3 and Edwards’ Syndrome or Trisomy 18.
One in five of all pregnancies ends in miscarriage and a high proportion are thought to be caused by a chromosomal disorder. A high proportion of trisomy 13 and trisomy 18 pregnancies end in miscarriage within twelve weeks of conception. It is therefore quite rare for such a pregnancy to continue to full term. The incidence of trisomy 13 is about 1 in 10,000 of new borns while that of trisomy 18 is about 1 in 6,000 of live births.
Support is provided during prenatal diagnosis, during the child’s life and after the child’s passing.
S.O.F.T. puts families in contact with one another, provides information, funds bereavement counselling, funds home support/respite assistance, publishes the S.O.F.T. Trisomy 13/18 Pre-Natal Diagnosis Support & Information Leaflet, the S.O.F.T. book “ Why Our Baby?” and a newsletter, organises family outings, conferences and arranges professional speakers, does fundraising through various events and links with S.O.F.T. organisations worldwide.
Babies have been born with Trisomy 13 and 18 since the beginning of time, but it was only in 1960 that Dr. Patau and Dr. Edwards identified the respective features of the syndromes. Both syndromes are the result of an extra 13th or 18th chromosome respectively being present in each cell in the body. Different variants of these syndromes also exist, but are less common.
The History of S.O.F.T. Ireland “Why Our Baby?” 2022
Marie O’Conghaile Founder member and first chairperson 1991 – 1995
“Most people who have been in contact with S.O.F.T. have given back in some way and it is this energy that has made it a very special group.”
Marie and Ronan’s daughter Aine was born with Patau’s Syndrome in 1986.
They were given no hope, brought her home to die, but she lived for seven and a half years!
Marie attended the first conference of S.O.F.T. U.K. in Birmingham in 1991. She met founders Jenny Robbins, mother of Beth (T13) and Christine Rose, mother of Jonathan (partial T18). The seeds of an idea were sown to extend the marvellous work of S.O.F.T. U.K. to Ireland: putting families in contact, supporting each other and giving information. September 1991 was the first get together of families who had the experience of having a baby with Patau’s Syndrome or Edwards’ Syndrome.
The first officers of S.O.F.T. Ireland were:
Chairperson – Marie O’Conghaile,
Secretary – Bernadette Doyle,
Treasurer – Sheila McManamly,
Newsletter Editor – Anne Boyle,
Patau’s Syndrome Contact – Joy Nairn,
Edwards’ Syndrome Contact – Larry and Kathleen Fenlon,
Northern Ireland Contact – Margaret Doherty.
In November 1991, the committee received their first cheque of £100 from Dr J. Houghton, geneticist, University College Galway. The first newsletter was printed in 1991 and the first conference was held in Athlone in May 1994.
Geraldine Dodd, Chairperson 1995 – 1998
Geraldine and John’s son John Gerard was stillborn with Patau’s Syndrome in 1994. Funding was received from the Department of Health to finance S.O.F.T. Ireland’s first book ”Why My Baby?” in 1996. The book was written by families from the heart of their experiences.
A link to Carmichael House charity centre was established and some committee meetings were held there.
In 1998, an application was made for the first time to all eight health boards for the National Lottery Respite Grant Scheme.
The SOFT summer newsletter 1998 received a facelift with a new colour cover and layout. Thanks was extended to Angela and Hugh Lambert and Dermot Keenan for their expertise. The workshops at the annual autumn conference in 1998 were very well received.
Angela Lambert, Chairperson1998 – 2000
Angela and Hugh’s only daughter Anna was born with Edwards’ Syndrome in 1982 and lived for five months.
Back in 1999, the Celtic Tiger’s prosperity and a fast-changing Ireland were reflected in the exciting advances being made within the S.O.F.T. organisation. A grant of £2,500 from the People in Need fundraiser was used to buy a complete desktop publishing unit and a Fuji digital camera. With these facilities, it became possible to produce a full colour newsletter with as many photographs as they wished. Hugh Lambert was editor and the newsletter was published seasonally, three to four times in one year!
The first spring break was held in 1999 in Killarney, thanks to the Civil Services Charities Fund and S.O.F.T. Secretary Brid McGovern. A generous grant covered some of the costs involved in bringing families all over Ireland together for a relaxing weekend.
In 1999, Alex Doyle set up the first S.O.F.T. Ireland website. It grew in leaps and bounds and was often and still is, the first port of call for new families.
Dessie Boylan, Chairperson 2001 – 2003
Dessie and Joan’s daughter Emma was born with Edwards’ Syndrome in 1992 and lived for seven years.
In early 2001, a close association was formed with the Jack and Jill Foundation, which filled the gap left by very limited support for families of special needs children from birth to four years. The foundation had a great back-up team of liaison nurses calling regularly to families.
After much research, the committee set up S.O.F.T. Home Support to give financial assistance to families caring for trisomy children of all ages at home.
Those families would need day or night nursing care, baby-sitting and child minding, respite for child and parents and help with the extra financial burden.
Fundraising was and still is vital for our organisation. One of the biggest events took place when Jim Martin and a group of friends took on the Dublin
City Marathon and raised over €23,000 in 2001.
Golf classics organised for three years by Mark Nolan, Denise O’Brien‘s brother-in-law, with the help of relations and friends, raised over €15,000.
Michael Fagan’s Limerick cycle from Malin Head to Mizen Head has been the most successful fundraising event to date for S.O.F.T. Ireland and not just in monetary terms. It raised awareness of S.O.F.T. all along the route down through Ireland. €102,500 was shared between S.O.F.T. and the Jack and Jill Foundation.
At AGM 2002, the name S.O.F.T. Ireland was agreed, bringing us in line with other groups around the world such as S.O.F.T. U.K., S.O.F.T. U.S.A. etc. It was also agreed to adopt a re-designed logo by John Lambert, son of Hugh and Angela.
Our Freefone number 1800 213218 was introduced in 2002 and is answered by our National Contact Co-Ordinator.
An ABBA tribute entertained families at an autumn break to tremendous applause (Dessie Boylan, Michael Fagan, Derry O’Brien, Terry Matthews)!
Martina O’Reilly, Chairperson 2004 – 2007
Martina and Frank’s only daughter Louise was born with Edwards’ Syndrome in 1989 and lived for a few hours.
In 2005, Paula Doyle organised a trip to Lourdes. Thirteen adults, two children and three children with special needs went along. Michael Fagan and Terry Matthews sponsored red jackets for the S.O.F.T. Ireland group.In late 2005, Hugh Lambert died suddenly after a short illness. May he rest in peace. S.O.F.T. members were left in shock, devastated and the “Why Our Baby?” book was put on hold. Martina then asked Paula Doyle to take over as editor and co-ordinator. S.O.F.T. Ireland were delighted to be part of Irish and international history when in 2007 they celebrated the 21st birthdays of Elaine Fagan from Limerick and Denise (Dolly) O’Brien from Meath. While they congratulated the girls on their wonderful achievement on reaching this milestone, they also acknowledged the care and love of their families in helping the girls reach 21 years.Martina is reminded of the very apt and beautiful quotation of Thomas Jefferson “Who then can so softly bind up the wound of another as he who has felt the same wound himself.”
Patrick Farrelly, Chairperson 2007 – 2009
Patrick and Pauline’s fifth child Patrick Gerard was born with Edwards’ Syndrome in 2003 and lived for nine months.
The “Why Our Baby?” book and new S.O.F.T. Ireland website were launched in 2008 with a large attendance of new and old members in the Glenroyal Hotel, Maynooth, Co Kildare. Denise O’Brien died in 2008, aged 22, one of our longest surviving children with T18. Michael Fagan became the first President of S.O.F.T. Ireland at AGM 2008. Patrick was a great entertainer!
Who remembers Elvis and Tina Turner etc?
Carmel Reilly, Chairperson 2009 – 2010
Carmel and Alan’s daughter Aoife was born with Edwards’ Syndrome in 1993 and lived for one day. Carmel worked tirelessly on the first committee members’ handbook, which was unveiled at AGM 2009. This included our constitution, policies and procedures, role of committee members and was a helpful guide for new committee members. Email addresses for committee members were also introduced.
In 2009 Helena Harcourt set up S.O.F.T. Under the Rainbow Facebook group. It is a private group of trisomy parents who share their experiences, stories etc. All new members are told about S.O.F.T. Ireland and other supports.
In 2010 the committee updated the S.O.F.T. Ireland logo and the “Pre-Natal Diagnosis Support and Information Leaflet” was launched.
This was compiled with the help of new members who shared their experiences and ideas. Our information officer distributes this leaflet to all the maternity hospitals at present and new families find it very beneficial. It is available on our website also and is updated regularly.
Terry Matthews, Chairperson 2010 – 2011
Terry and Geraldine’s eldest daughter Ellen was born in 1996 and is one of our longest surviving children with Edwards’ Syndrome.
Terry- with family, friends and relationsorganised several Valentine balls, some in Darver Castle, Co Louth, to raise money for SOFT. These were the highlight and the talk of the year for many!
Paudie and Daniella Fitzgibbon founded S.O.F.T. Italy in 2011. Later that year families from Northern Ireland, Irish Republic, England, Scotland and Italy, living with trisomy, gathered at Daly’s Hotel, Hope St., Belfast. Though all present did not come from the same background or jurisdiction, the stories which were told contained a familiar theme and the powerful emotions of the stories were both visible and audible to those present. Elaine Fagan died in 2011, aged 24, one of our oldest living children with T18. Her family have been an inspiration and strength to SOFT for many years.
Fiona Hennessy, Chairperson 2011 – 2014
Fiona and John’s only daughter Leah was born in 2005 with Edwards’ Syndrome and lived for six weeks.
S.O.F.T. Ireland celebrated 20 years in 2011 with presentations by Marie O’Conghaile, Paula Doyle and Fiona Hennessy, rolling back the years!
In 2012 the S.O.F.T. Ireland tree was purchased, where the names of special children can be attached at family gatherings and the tree can be transported to all events.
The S.O.F.T. Ireland tapestry was introduced in 2012, dedicated to all our trisomy children both living and deceased.
In 2013 Derry O’Brien died, father of Denise (Dolly). He served time on the committee and helped S.O.F.T. in many ways down through the years. May he rest in peace.Martina and Paul Murphy organised “Run For The Hills” in 2014, in memory of their daughter Katie and raised €25,000 for S.O.F.T. Ireland.
Adrian Conroy, Chairperson 2014 – 2016
Adrian and Antoinette’s first child Adam was stillborn with Edwards’ Syndrome in 2005.
In 2015 S.O.F.T. Ireland registered with the Charities Regulator and got its new registered
In 2016 S.O.F.T. Ireland, Every Life Counts, Féileacáin, and the International Trisomy Alliance co-hosted the International Conference on Perinatal and Hospice Care, which took place in the Royal College of Surgeons, Dublin. A memorable S.O.F.T. family picnic took place on 11 June 2016 in Newbridge House, Dublin. Ann Rooney represented S.O.F.T. Ireland at the launch of the “National Standards for Bereavement Care following Pregnancy Loss and Perinatal Death” in 2016. S.O.F.T. Ireland’s 25th anniversary was celebrated in the Shearwater Hotel, Ballinasloe, Galway at the autumn break in 2016 also. There was a photographic exhibition of the first 25 years – highlights included group photos of various AGMs and spring breaks, fundraising events, all the chairpersons down through the years, the late Hugh Lambert (newsletter editor), book launches, birthdays, ABBA 2001, Elvis 2005, Lourdes 2005 etc. During dinner on Saturday night, the highlights from S.O.F.T. newsletters over the years were revolving on the wall. A special 25th anniversary cake was cut. Marie O’Conghaile, founding member, joined the closing ceremony on Sunday morning. Each family took home a 25th anniversary keepsake of a circle of angels with a candle in the centre.
Patrick Rooney, Chairperson 2016 – 2017
Patrick and Ann’s only son Christopher was born with Patau’s Syndrome in 2012 and lived for five days. S.O.F.T. Ireland became a beneficiary of the Association of Irish Celtic Supporters Club (AICSC) 19th annual charity dinner in 2017, thanks to Fergal Christie, whose daughter Caitlin had T18. Pat organised a very important members’ survey, “What S.O.F.T. Ireland Does”. He presented a workshop on
“The Future of S.O.F.T.” at AGM 2017. The results of the survey were:
- Freefone for contacting S.O.F.T.
- Create awareness in maternity hospitals.
- Communications to members.
- Home support.
Alex Doyle, Chairperson 2017 – 2018
Alex and Paula’s only daughter Brona was born with Edwards’ Syndrome in 1995 and lived for seven hours. After AGM 2017, Alex took on the role of Chairperson for one year, otherwise S.O.F.T. Ireland could not survive.
There were several fundraising events in 2018 including Beauty and the Beast in Lisburn, Memorial Bike Run for Kenny in Edenderry, Monster BBQ in Carnaross, Kells and various coffee mornings around the country including the annual fundraising day in Ian and Jackie O’Brien’s house in Dunderry, Navan. There was also the annual donation from Stables Club, Limerick and Coca Cola, Drogheda.
Following on from the membership survey, Alex and Paula reviewed and modified the S.O.F.T. Ireland committee members handbook. This was ratified at an EGM in 2018 and is now recognised by the Charities Regulator. The number and role of committee members was revised as follows:
Honorary President, Chairperson, Secretary, Treasurer, National Contact Co-Ordinator, Web Officers, Information and Distribution Officer, Newsletter CoOrdinator, Fundraising Sub-Committee, Autumn Break/Family Outing SubCommittee, Respite Grant & Social Welfare Co-Ordinator, Membership Officer, Tribute Book Officer, General Committee.
Paula Doyle, Chairperson 2018 – 2021
In 2018, S.O.F.T. Ireland was at a crossroads. Paula Doyle took on the challenge of Chairperson, Patricia Grehan returned to the committee as Secretary and Jane Kenny took on the challenge of Treasurer. Paula’s daughter Brona was born with Edwards’ Syndrome in 1995 and lived for a few hours, Patricia’s son Ciaran was born with Patau’s Syndrome in 2007 and lived for 10 minutes and Jane’s son Ruairi was born with Edwards’ Syndrome in 2009 and lived for six days.
In October 2018, news travelled of the sudden passing of an inspirational and amazing lady, Kay Fagan, mother of Elaine.
In January 2019, termination of pregnancy became legal in Ireland and those whose baby has a prenatal diagnosis of Patau’s or Edwards’ Syndrome now have the option of a termination.
In March 2019, the first family outing one night stay was organised in Ballinasloe with family bingo, children’s art and bubble release etc.
In 2019, Ayla was born, the first child that we know of who has Edwards’ Syndrome and Down Syndrome. She is making steady progress.
In 2020, the Covid -19 pandemic struck and lifestyles changed dramatically. The family outing was cancelled, the Zoom family quiz was introduced, followed by the Zoom AGM and SOFT’s Got Talent and the Zoom Christmas catch-up. S.O.F.T. Ireland, like many other Irish charities, experienced a deficit in funds.
The lengthy Charities Regulator Compliance Form was filled up in 2020 for the first time. Anne Marie Gallogly, Claudia Freeman and Louise Wylie celebrated their 25th birthdays in 2020.
S.O.F.T. Ireland celebrated its 30th anniversary in 2021 with a review of its “Why Our Baby?” handbook etc. The speaker at the Autumn Break/AGM was Roderic O’Gorman, Minister for Children, Disability, Equality, Youth and Integration.
Two young people, Molly O’Reilly and Marian Ni Chathasaigh, and two people with special needs, Vanessa Meehan and Jamie Cronin joined the Committee for the first time.
Ellen Matthews celebrated her 25th birthday, Brian Brady and Jamie Cronin celebrated their 30th birthdays in 2021.
We hope S.O.F.T. can continue to support families with trisomy children in Ireland for many years to come.
The History of S.O.F.T. Ireland “Why Our Baby?” 2008
The following is the history of S.O.F,T, Ireland as recorded in some newsletter articles and in accounts by former chairpersons.
S.O.F.T. Ireland Winter Newsletter 2001
A TIME TO LOOK BACK
|The 10th Anniversary of S.O.F.T. Ireland Reflections by Marie O’Conghaile, founder member and first chairperson|
Geraldine Dodd and Marie O’Conghaile, Marie O’ Conghaile and Dessie Boylan
“Most people who have been in contact with S.O.F.T. have given back in some way and it is this energy that has made it a very special group”
THIS is a time for looking back: The 10th Anniversary of S.O.F.T.
September 1991 was the first get together of families who had the experience of having a baby with Patau’s syndrome or Edwards’ syndrome. A small group of nervous, hurting, apprehensive people gathered in the Prince of Wales Hotel, Athlone, quite unsure of the future – Anne Boyle, Margaret Doherty, Edward and Bernadette Doyle, Noel and Sheila McManamly, Marie and Ronan O`Conghaile and Siena Ravensberg. All were united in a common experience of having had a baby with a trisomy, and all had a common goal to set up a support group to help other families experiencing the birth of a baby with Patau’s or Edwards’ syndrome.
On October 17th 1986 my daughter Aine was born in Portiuncula Hospital, Ballinasloe. The sad news that Aine had Patau’s syndrome and was severely handicapped both mentally and physically, was given very sympathetically to myself and Ronan by Dr. K. Connolly, Consultant Pediatrician. The future seemed grim and sadly there seemed to be no future for Aine, as babies born with Patau’s syndrome rarely survived beyond the first year. Our hearts heavy, we brought Aine home to die.
One year later Aine was still with us and doing very well, so we decided to take a more positive attitude and to deal with a child with serious problems who was part of the family. Our oldest child Niamh was eight, Conor was six and Donal was born when Aine was eighteen months old. They were difficult years, especially for Aine, with many a crisis to be overcome, permanent exhaustion and some joyful moments. We felt so alone. Why had this happened to us? This was a baby we welcomed and could give so much to.
Why Aine? The only information we had was clinical medical literature, with distressing illustrations and a list of medical terminology that necessitated a medical dictionary to comprehend. The loneliness and the isolation were all encompassing.
Who could we turn to? Who could guide us?
In October 1988 we met Noel and Sheila McManamly in Portiuncula Hospital, Ballinasloe. Their daughter Dara was newly born with Patau’s syndrome. Although respecting the sorrow of Noel and Sheila, I was selfishly glad they had a baby with the same syndrome as Aine. I wasn’t the only person. For me this was the first human contact with a family in our own circumstances. Sadly, Dara lost the fight to live after three weeks.
Life went on. Would I ever meet anyone caring for a baby with Patau’s syndrome?
Later in 1988 I heard that Anne Boyle, my past pupil that I had known since she was 12 had given birth to Shane who had Patau’s syndrome. Anne cared for Shane for six months until he also parted this world. Anne and myself shared our concerns and worries. Some time later I met Margaret Doherty and of course Megan who had partial trisomy. Megan was very like Aine, in age and appearance and presented some similar problems in caring. At last I could talk to someone who understood.
These were the emotional beginnings of S.O.F.T. The more practical beginnings originated in 1988 when Laurette Kiernan, a social worker in Temple Street Hospital through a family member gave me the address of “In Touch,” an umbrella organisation of support groups in the UK founded by Anne Worthington, MBE.
AFTER about three years when Aine was four and a half I felt strong enough to contact “In Touch.” Imagine my surprise to discover that Jenny Robbins and Christine Rose had just founded a support group in 1990. Jenny is the mother of Beth with Patau’s syndrome who lived for three months. Christine is the mother of Jonathan with partial trisomy 18. I attended the first conference of S.O.F.T. UK in Birmingham June 1991. Noel McMamamly also attended the conference. I was delighted to meet Fiona and Duncan Kerr caring for John with Patau’s syndrome. John was aged three. I also met Phil and Sylvia Hanly caring for Alastair aged thirteen who also had Patau’s syndrome. There were other children like Aine in the world. I returned home happy.
The seeds of an idea were sown to extend the marvellous work of S.O.F.T. UK to Ireland: putting families in contact, supporting each other and giving information. I knew I would have the support of S.O.F.T. UK as Jenny had very generously pledged financial help, and the use of their newly published booklet, “Why My Baby”. Three months later after many phone calls and letters our group met in Athlone. S.O.F.T. had its growing pains. We resisted pressure from the “Foundation for the Prevention of Childhood Handicaps” (FPCH) to become part of their group. We felt S.O.F.T. was strong enough to go it alone. We had no money and we had no experience of running a group. We just had a belief that we had something to give to others. S.O.F.T. had as its ethos that if we could help one family not to have to endure the loneliness, isolation and lack of information that we experienced, then it was worthwhile.
I would like especially to remember the first officers of S.O.F.T: Bernadette Doyle our first Secretary; Sheila McManamly our first Treasurer; Anne Boyle, the first newsletter editor; Joy Nairn, S.O.F.T.’s first contact person for Patau’s Syndrome; Larry and Kathleen Fenlon, the first contact persons for Edwards’s Syndrome and Margaret Doherty S.O.F.T.’s first contact person for Northern Ireland. These people had no precedent, they could not ask, “How did you do things last year?”
SPEAKING on behalf of S.O.F.T I would like to acknowledge and thank these people for their belief in me and for their vision and hard work in setting up S.O.F.T.
I remember from the meetings of 1991- 1992 Jasper and Della McKinney who designed our first posters, Geraldine O’Reilly, Fred and Michelle Faulkner, Mary and Derry O’Brien, Rosemary McCumiskey, Dessie and Joan Boylan, nurses Evelyn Higgins and Catherine McHale who gave a professional touch.
There were many more that were in contact. I recall some milestones in the development of S.O.F.T. In November 1991 S.O.F.T. received a cheque of £100 from Dr J Houghton, geneticist at University College Galway. I do not believe any Lotto winner could have been more excited -we had a professional who believed in us and we had money. Dr Houghton spoke subsequently at S.O.F.T.’s first conference and I know he holds a very special place in the hearts of the founder members of S.O.F.T.
Next milestone I recall was a major funding drive by Miriam O’Connor from Boyle in 1992. This fundraising was a parachute jump, involving friends and family of S.O.F.T. members and indeed anyone we could persuade to be adventurous and courageous and jump out of an aeroplane to help us. Again we had many who believed in us and thanks to the determination and hard work of Miriam, who, fuelled by her love of Aine, raised in excess of £6,000 for S.O.F.T. This money enabled S.O.F.T. to move forward and develop and implement plans and projects to help families.
Our next milestone was a commitment from the Department of Health to fund a booklet as yet not started. The booklet was a major undertaking over a period of over two years. Groups held meetings all around the country deciding on content and format, culminating in the launch of “Why My Baby” in November 1996 by the Secretary of State at the Department of Health, Mr Brian O’Shea. The book was written by families and from the heart of our experiences.
OUR first Conference in Athlone May 1994 was a joyful and sad experience. It was sad that Aine had died three weeks previously aged seven and a half. It was joyful in that her birth had brought about a forum where people came together from all parts of Ireland to meet, share, laugh and weep. We remember our speakers on that day, Dr. Jim Houghton, Dr. D. Brown, Consultant Paediatrician at Atnagelvin Hospital, Derry, and Ms Nuala Harmey, Social Worker at Temple St Hospital, Dublin.
Thinking about the past 10 years of S.O.F.T., there have been so many people that have helped its development. Indeed I believe that most people that have been in contact with S.O.F.T. have given back in some way and it is this energy that has made S.O.F.T. a very special group. Looking back and reflecting on the people who began with S.O.F.T. in 1991-1992, some are still present in an official capacity:
Mary and Derry O’Brien, Margaret Doherty, Dermot Keenan and I know Mary is in the background, and of course Dessie Boylan supported by Joan.
It is fitting that Dessie leads S.O.F.T. into the second decade. He knows the difficulties of caring for Emma for seven years and the pain of bereavement. I know he will continue to implement the ethos and ideals of S.O.F.T: to provide information, to put families in contact and to support each other through our common experience of having a baby with Patau’s Syndrome or Edwards’ Syndrome.
Why Our Baby?
The SOFT booklet has been written by parents who had babies with a Trisomy 13/18 syndrome or related disorder and contains a significant amount of information on both syndromes.
It is available from SOFT as a printed booklet or can be downloaded from the SOFT website. Its contents include:
- Why Trisomy 13 or Trisomy 18?
- Information on chromosomes
- The heart function and defects
- Pre-natal diagnosis
- When your baby is born
- How long will my baby live?
- Special care baby unit
- Feeding and digestion
- A double sorrow
- When your baby dies
- Children and bereavement
- Having another baby
- When your baby lives
- Family stories