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SOFT UK Scottish Family Day 2013

The SOFT UK Scotland Family Day was held on the 7th September at the Glynhill Hotel in Renfrew.

As always it was a fabulous opportunity to meet long-time friends and see how all the children are growing up.

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 morning was mostly devoted to family time, catching up with everyone and hearing what the last year has brought for everyone.  David Delargy gave a very moving account of the short life of his son Drew who was born last year.  David talked about their family's experience, in particular how they managed to sustain family life around meeting Drew's needs when he was acutely unwell. It was great to hear a father's perspective as it is a number of years since we last had a dad as the family speaker and it can be an experience that is not recognised by support services or even by friends and family. 

Lunch

As families shared experiences, there were some key themes to the morning.  There was significant consideration of the impact of the timing of diagnosis on the treatment of babies born with a trisomy, in respect of whether or not a late diagnosis sometimes enabled them to have more treatment options than babies who had a confirmed karyotype.  There was also a lot of interest in the comparison of bereavement support across the country and also across services.  An example being the difference between services offered to those who used hospices and those who did not.  Another interesting perspective was the lack of bereavement care when young people with Trisomy reach adulthood and leave children's services. 

The morning finished with some interesting discussion about how SOFT could better support families caring for children with Trisomy, in particular those children who are not considered palliative or who live for a longer time.  There were many good ideas about information, cross reference with other organisations and also about what a support service for these families might look like. 

The children were delighted this year to have a much larger crèche facility, due to the growing numbers of children and young people attending the event.  This gave them plenty of opportunity for playing games and generally making LOADS of noise!  They did find a little time to knuckle down to some hard work though, making a beautiful rainbow SOFT banner with lovely pieces of "gold" with all their names on the names of their SOFT brothers, sisters and other relatives that they wanted to remember. They also made some beautiful tealight holders for the remembrance service in the afternoon. 

Cheese!

We were delighted as always to have the wonderful Ellie Cockburn with us again.  Ellie is ten years old and has T18 mosaic.  Ellie has been to every SOFT Scotland event since she was born, which I think must be a record.  She is growing up fast, taking an active role in mothering all the little ones in the crèche now.  She is always second in to the dressing up box and has learned to be quick around the place to avoid the attentions of Matthew who has decided Ellie is his girlfriend.  (not sure she had much choice in that!)  We were also delighted to welcome back Ayla, who is has full T18 and is now two whole years old.  Ayla came to her first SOFT Scotland event when she was just weeks old, but wasn't able to join us last year.  It was wonderful seeing her looking so happy and healthy and she was definitely the star of the show. 

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After eating a whole load of chips and cake (not me I had salad, honest!), we welcomed the afternoon's speakers.  We were delighted to welcome Sue Hogg, the Director of Care at Rachel House and Dr Pat Carragher, the Medical Director of CHAS in Scotland.  We had invited CHAS to speak to families as their services are very relevant to the majority of our families.  It was wonderful to actually hear from the services from their perspective, about the sheer range of things they are able to offer and about how respectful they are of family's own wishes and needs.  Several families discussed their own experiences of CHAS and the services they found helpful.  There was also much discussion about how SOFT and CHAS could work together to improve care for families.

Following this we had a short presentation of Dr Joan Morris' most recent research on UK survival statistics for babies born with T13 and T18.  The research is yet to be published but Dr Morris was kind enough to provide us with a summary of findings for discussion.  There was much interest in these findings as it would suggest that the current survival statistics given to parents are very out of date.  We talked about the implications this should have on care planning for babies born with the conditions.  Dr Morris hopes to follow up this research to look more into long-term survival rates, the impact of care decisions on survival term and to see if there is any link between the timing of diagnosis and survival term.  (Dr Morris' research will be available on the research section of the website as soon as it is published).

Dr Una MacFadyen then took the floor to give a round up of the year's updates.  Dr MacFadyen is a Consultant Paediatrician from the Forth Valley Royal Hospital and has been a SOFT adviser for many years. 

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To close the daytime programme we held our Family Time, which is a time for all of us to reflect on our SOFT journeys, about the children who brought us together, all their brothers and sisters and about the SOFT family as a whole.  Erin Egan read out the beautiful "Sadie's Star" book to the children.  "Sadie's Star" is a children's book written by one of our members Sam Collins, about the brief life of her beautiful daughter Sadie.  All the children lit tealights and showed us the "pots of gold" they had made in memory of their brothers, sisters and uncle.  There was some rather raucous bubble blowing at various stages. 

During this time we took a moment to remember Adam Simpson, a long time SOFT Scotland member who sadly passed away in February, just before his 16th birthday. Adam was a welcome face at SOFT events and had been enjoying a healthy time when we last saw him three years ago.  All our thoughts are with his family and friends at this difficult time.

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Unable to say goodbye quite yet, many families stayed on for an evening meal.  This is the second time we have offered this option and we were really pleased to see so many families joining us for the evening this time.  It was a great chance to get time to speak with everyone, especially for those of us organising or with little children, whose feet don't touch the ground during the day.  And hats off to little Ayla, who I am sure was the last one home on Saturday night!  We are hoping to be able to offer this option regularly now as a little extension to the day as it was so popular. 

A huge, massive and extremely grateful thankyou to Emily Van Tonder who almost single handedly organised this year's event, from booking the hotel and crèche, to panicking about slide projectors, taking endless photos and painting rainbows the night before she caught the plane from Shetland.  It is no mean feat to put on something like this for everyone, so many thanks Emily for all your hard work!!

I hope you enjoy the photos!  We will add more as people send them in so do check back.  If you are interested in finding out about this annual event or about SOFT in Scotland, please contact Liz Egan on Scotland@soft.org.uk

Hope to see you all next year!

Demi, xx