Support in England and Wales
I am Amanda and one of the telephone and email support helpers at SOFT. I first became involved with SOFT in 1995 when we got the news when I was 22 weeks pregnant with our second son Joshua that he had trisomy 13.
We chose to carry on with the pregnancy, and during this difficult time the information and support from SOFT was very helpful.
Joshua was born in October 1995 and died in Feb 1996 - a very special four months for us as a family. The following year we had healthy twin boys, Samuel and Jacob.
I now work as a teaching assistant in a local boys secondary school and with three teenage sons of my own I am kept pretty busy! I have been a rep for SOFT for a number of years, answering telephone calls and more recently emails from parents needing support. Although it is now a number of years ago that I was caring for a child with a trisomy myself, I believe I can still empathise with newer parents and hope I am able to be of some help to them, Mandy
My daughter Angharad was diagnosed with Trisomy 18 (Edwards Syndrome) shortly after birth and died at 12 days. During this difficult time SOFT UK was a great support to our family and have been since, so I wanted to be of some help to other families touched by Trisomy.
Having made the decision to carry on with one pregnancy, and terminate a pregnancy with severe abnormalities I felt that I could understand how difficult it was to come to each decision. I now help SOFT UK and ARC when parents want to talk to someone after a prenatal diagnosis.
In 2006 we were told that our unborn baby was showing signs of trisomy 18. After testing, trisomy 18 was confirmed in the 24th week of my pregnancy. My husband and I chose to carry on the pregnancy and on 26th November our daughter Charlotte was born.
Charlotte was with us for a wonderful 6 months and 3 days before she passed away on 29th May 2007. Later that year we decided to try for another baby and sadly our little girl Jackie had severe brain abnormalities. Again we were in a position where we had to make a choice whether to carry on the pregnancy or terminate. We decided that we would terminate.
After returning to study and being comfortable with my grief, I decided that my experiences of carrying on and terminating a pregnancy could be of use to other parents who are struggling to make a decision. I talked to SOFT UK and with their help I completed a distance learning pack, and passed the final practical assessment with ARC.
Best wishes Laura
My youngest son Nigel is 42 and is believed to be the oldest survivor in the world with trisomy 13 Patau's syndrome.Hi, I am Rita and I am 69 years of age and married to Gerry. We live in Cornwall and have 2 daughters, Jackie and Josie and a son, Nigel.
Before retirement I worked part time as a Medical Receptionist at our local Outpatients Clinic and in General Practice. I was fortunate to be able to choose my hours of work to fit in with caring for Nigel. It was hard going sometimes but good therapy. Since retirement I have continued to keep busy and I’m Secretary to our village Gardening Club and Manager of the WRVS Tea Bar at our local Hospital. I love gardening, craftwork and Family History.
I have been a member of SOFT for many years, not active, just receiving the magazine, but now I am pleased to be supporting the group by helping out with the newsletter and keeping in touch with families. I recently attended my first SOFT conference, and this gave me the opportunity to meet many of you and put faces to names. It was good to see you all, Rita.