We were not alone
Receiving a diagnosis of Trisomy 13 or 18 can feel overwhelming and isolating. Through our support line, volunteer supporters and monthly Zoom calls, SOFT UK aims to ensure that no family has to face that journey alone.
One family recently shared their experience with us:
"At our 20-week anomaly scan we were told that there was an issue with our babies measurements, and by 23 weeks, we learned she had Edwards Syndrome, a rare genetic condition they said was not compatible with life. We had never heard of it before. The weeks that followed felt incredibly lonely, even as she continued to grow.
At 29 weeks, we joined a parents support Zoom call with Soft UK, where hearing real-life stories from other families provided us with the information we desperately needed. There wasn’t much available online, but their experiences helped us understand what we might face. I had subsequent calls with a Soft UK volunteer, the information she shared about her own experience helped me hold on to that hope and feel more supported. I knew what questions to ask at appointments, what supports was available and I felt it helped me to prepare mentally for the weeks and months ahead.
On March 17th, our beautiful girl was born. Though she lived for just one day, that day will always be one of the best days of our lives. Soft UK was a vital source of support during our darkest times. A lifeline. The genuine support and shared experiences made a world of difference. We were not alone."
Our SOFT UK Support Line is Here for You
Our Support Line is open to everyone, whether you're a parent, sibling, grandparent, friend, colleague, or a professional seeking guidance.
There are no limitations or expiration dates to the support we provide.
We understand the unique challenges and emotions that come with trisomy, and all of our trained supporters have personal experience with trisomy, enabling them to offer an empathetic ear and provide a safe space for you to share your thoughts and feelings.
Reach out to our dedicated support team. Call us and leave a message on our voicemail and someone will get in touch, or email us using the details below:
📞 Support Line: 0300 102 7638
Monthly Support Zoom Calls
Our monthly support Zoom calls offer families the opportunity to connect with others who understand the realities of a Trisomy 13 or 18 diagnosis. Whether you are navigating a recent diagnosis, caring for your child, or coping with loss, these sessions provide a supportive and welcoming space to share experiences and ask questions.
Details of our upcoming Zoom calls will be released shortly, so keep an eye on our website and social media channels for more information.
Because no family should have to face a trisomy diagnosis alone.