SOFT UK

Registered Charity Number 1002918

Total raised
£6009.35 + £671.72 Gift Aid = £6681.07
Fundraising
£4884.35
+ £507.96 Gift Aid
Donations
£1125.00
+ £163.75 Gift Aid

About SOFT UK

SOFT UK provides information and support to families affected by Trisomy 13 (Patau's syndrome) or Trisomy 18 (Edwards' syndrome) and related conditions. We provide support through all stages of the Trisomy journey and beyond.


  • SOFT UK provides information and support during a pregnancy, to families awaiting test results, ending a pregnancy, or continuing with a trisomy pregnancy.
  • SOFT UK supports families caring for babies, children and adults affected by Trisomy. We provide information, spaces for families to share experiences and regular family meet-ups.
  • SOFT UK supports families if a bereavement occurs, for as long as they need it.
  • SOFT UK support is offered to all members of the family, including siblings, grandparents and friends.


SOFT UK also offers information and support to professionals working with families affected by Trisomy:


• Information briefings for professionals

• Medical advisers across a range of specialisms with experience of Trisomy

• Bespoke training opportunities for Health Professionals

• Consultation services

Get fundraising!

If you'd like to run, swim, bake (or do anything else to raise some money), click the button below to get started. It's quick and easy to register and by doing so here at Wonderful.org, you can be sure that every penny raised will reach SOFT UK.

Current fundraising pages

Great North Run

Nineteen years ago my world changed for good when I was told by my Obstetrician in Thailand that 'your baby has something called Trisomy 18 and will die'. It really was as blunt as that and her only way to explain the condition was to show me pictures in a book. I was then to be devastated further
when told that the beautiful and much loved baby boy I thought I was expecting was actually the baby girl I craved to complete our family of two boys, Matt (now 23) and Josh (now 20).It was at this point that I learned about SOFT (UK) and it was the lovely, caring people who run this charity that got me through my darkest days. For this I remain and will always be eternally grateful.Grace Emily Wilson was born asleep at 28 weeks gestation on Friday 4th May 2000 in RVI Hospital, Newcastle upon Tyne. She became then and is to this day a huge part of our family who we talk about daily and who has a plot in our garden where we sit to remember her. When I say 'we', this includes two rainbow siblings, Lewis (now 18) and Libby (now 13) who both refer to Grace as their
big sister and visit her grave regularly.In thanks for the support given to me and so many others by SOFT (UK) we as a family have tried to return the support whenever possible over the years including sponsored events, a collection at a wedding and nominating SOFT as a charity to be supported by National Citizenship Service when my eldest son took part in their activities. Now it is my turn to return the support and is the reason for this fundraising page. When I turned 50 this year I wanted to do something different so took up distance running with a view to completing the Great North Run, my home half marathon!!I had wanted to run the GNR solely to raise money for SOFT but was unable to secure a public place. I was able to get a place with another charity with a requirement to raise an initial £300 for that charity. I am now close to that total and so would like to try to spend the last 10 days getting sponsorship for SOFT. This is where you all come in!! We all follow the SOFT (UK) page because all of our lives have been touched by Trisomy and as such I would be so grateful if you would consider sponsoring me any amount, even just the cost of a coffee.This will
help give something back so that this fabulous charity can continue its ongoing support for people like me and you by just being there with advice and compassion as well as helping to keep alive the memories of our precious children.Thank you from the bottom of my heart in advance.

Sue Wilson

  • Disability

Contentive Ltd - SOFT UK Fundraising

SOFT UK is a charity devoted to supporting the parents, families and children affected by trisomy 13 and
trisomy 18 (known as Patau and Edwards Syndromes respectively) which has affected our dear colleague Ros Hill.
She has shared her experience below.

Trisomy means that someone has an extra chromosome, and Down Syndrome (trisomy 21) is the most common of these. Because there has been relatively little research into and awareness of Patau and Edwards Syndromes, many won’t have heard of them, and it’s only in recent years that prenatal screening for the conditions has been offered. Unfortunately, as a result of the lack of research and knowledge about the conditions, the prognosis and treatment of children born with either condition is very poor.
Receiving a prenatal diagnosis is absolutely heart breaking, and you’re presented with the choice of terminating the pregnancy of an already much-loved child or continuing the pregnancy knowing that you’ll either miscarry, your child will be stillborn, or that they will die shortly after birth (in a few cases many children do live to see their 10th birthday, and some have even been known to live to their 20s).
Unfortunately the medical community do not offer anywhere near the support they should for parents facing such a diagnosis and uncertain future. We decided to continue with our pregnancy despite the diagnosis of Edwards Syndrome, precisely because we were given the choice, but every step along the way our physicians have made us feel very judged for that decision and at every appointment took the opportunity to remind us that ‘your child is going to die’. Even prospects for post-birth care (I honestly never thought I would make it so far as this) are lacking – doctors are entirely reluctant to offer any form of life-extending treatment to a child with Edwards or Patau because life expectancy is so low, and despite research that shows that interventions at birth can improve outcomes for such children. Rather, you are pushed towards palliative care over active care, because many in the medical community see it as a waste of time to do otherwise.
The whole experience of continuing with your pregnancy in these circumstances is a very lonely one. You have no support from doctors, and friends and family don’t understand what you’re going through. You feel as though you can’t celebrate your pregnancy in the same way as others because every day is tinged with sadness and worry, and while everyone tells you to keep your hopes up, too much hope can be impossible. We haven’t prepared a nursery at home, we haven’t had a baby shower, and we don’t even know whether our girl will get to see outside of the hospital. We don’t even know whether she will be born alive.
SOFT is entirely made up of volunteers – other parents who have lived through what we are living through – and provides support during prenatal diagnosis, termination, continuation of pregnancy, miscarriage and stillbirth, and loss and bereavement, as well as support to those families caring for a baby, child or adult with Patau or Edwards Syndromes.
The work they do is so important to many on what can be a hugely isolating, worrying and devasting journey, so I really appreciated your support in raising funds and awareness.

Chloe Darbin

  • Disability
Show all fundraising pages

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