The venue for the 20th SOFT UK Family Weekend
May 8th-May 9th 2010
Last year the speaker was Joanne Harcombe, who is the National Education Lead for the Antenatal and Newborn Programmes at the National Screening Committee and she gave a presentation about the screening tests that are now available, and how expectant mothers are prepared for them.
There was an optional service in memory of babies and children with trisomy 13 (Patau's syndrome), trisomy 18 (Edwards' syndrome) and related disorders, and parents shared cherished memories in the Tribute Book.
After lunch several issues were discussed including prenatal diagnosis, caring for a child with trisomy, and coping with bereavement. Everybody agreed the day was a wonderful opportunity to gain useful information and share emotions and memories.
Major Fundraising Events
SOFT UK is supported entirely by fundraising and donations, and money is raised in a variety of ways including coffee mornings and sponsored events.
 Emma raised £500 for SOFT. |
 Emma James with Stacey (Simon's mum) after cycling the 50 miles of the Great Nottingham Bike Ride 09. Stacey knew Simon had Edward's Syndrome after a prenatal diagnosis. |
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If you are registered with SOFT UK and have lost a baby or child with trisomy 13 or trisomy 18 (Patau’s or Edwards’ syndromes) please contact us if you would like their name and dates entered under a star on our SOFT Remembrance page. |
The SOFT UK Scottish Family Day
Dunblane Hydro 07.11.09
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Full report and photographs in the March 2010 newsletter. |
It was great to see so many families and lovely to welcome some new faces, including Kyle (trisomy 13) and his family. The first speaker was the popular and ever informative Dr Una MacFadyen, a consultant paediatrician who has been associated with SOFT for many years. She talked primarily about the new National Development Plan in Scotland, a plan aiming to achieve parity of care for all, regardless of their illness or disability. Una suggested that families present would have lots of important information and feedback to submit to the current reviews that are going on and we should seek to be a part of this process. The Conference then welcomed Kirsty Freeland, the Coordinator of Strathcarron Hospice’s Children’s Bereavement Service, the first dedicated bereavement service for children in the Forth Valley that enables children to meet others in the same situation, normalizing their experiences and promoting peer support. Children then move on to resilience building work and establishing coping strategies. The service also ensures the young people receive support at home and helps parents deal with any grief issues they may be experiencing. Laura Petrie then gave a beautiful account of the too brief life of her and Charlie’s beautiful daughter Charlotte (trisomy18), Later everyone had a much needed catch up and it was great to have some dads and siblings volunteering for jobs next year. It was also wonderful to see how all our young people are getting on! The kids spent a fabulous day in the crèche getting to know each other and ‘helping’ the staff! |
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The deadline for contributions to the next newsletter is January 2010 and will be published in March. Please email news, attach (jpg) photographs and include your address, telephone number and permission for publication to the editor Daniela Robbins at daniela.softnews@live.co.uk. |
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Mario McNamara ran the 2007 Flora London Marathon in 3 hrs 6 minutes in memory of his nephew Connor who had Patau's syndrome (trisomy 13). Mario raised £150 for SOFT. |
SOFT UK publishes two helpful booklets
Your Unborn Baby and Your Baby can be read on our website, text only. Click on a booklet and choose a section from the index.
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 Explores the issues faced after a prenatal diagnosis of trisomy 13 or trisomy 18 (Patau's and Edwards' syndromes), what is involved when a termination is chosen and how to plan when the pregnancy continues. |
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 Gives information about the birth of a child with trisomy 13 or trisomy 18 (Patau's and Edwards' syndromes), and the early months of life, with sections on siblings, bereavement and a new pregnancy. |
SOFT UK also distributes the SOFT USA Caring For a Child booklet. Although SOFT UK booklets are free to families who have been affected by one of these conditions, professionals and students are asked for a donation of £5 per information pack to cover print/postage costs.