Support

Before SOFT UK was set-up in 1991, most families didn't know where to turn when they received a diagnosis of trisomy 13 or trisomy 18. Their experience of trisomy was hugely isolating and they felt completely alone. Today, there is range of places that you can turn to for support.

The support offered by the SOFT UK family support volunteers is a key part of how we help families - and we're here for you for as long as you need us. You may not feel able to talk to anyone about your experiences but, if you prefer, we can support you by email or text. Contact us

Or perhaps you would prefer to turn to Facebook groups or reach out to other families after reading their personal blogs. We have listed a few but let us know of any other sources that you found especially helpful.

 

How We Can Support You

The SOFT UK family support team can be contacted:

All members of the SOFT UK family support team are volunteers with personal experience of Trisomy 13, Trisomy 18 or related conditions. They have all completed a bereavement training course and have ongoing supervision.

As we are a small charity the telephone line is not permanently staffed. Please leave your name, number and query and we will always return your call. If we do not reply to an email within 24 hours, please resend the information in case we did not receive it.

We provide support to families:

  • Through prenatal diagnosis 
  • During pregnancy
  • When a pregnancy ends 
  • For families caring for a baby, child or adult with T18 or T13
  • Through loss, bereavement and grief
  • To families experiencing anxiety about future pregnancies

Support Volunteers

SOFT UK has trained volunteers who provide support to families via email, text and telephone. All our volunteers have had direct family experience of Trisomy. When we receive your enquiry, we will pass it on to the person who is best placed to support you - this may be the volunteer closest to you, or the one with knowledge or experience of your situation. We're only an email or a phone call away.

SOFT UK Publications

SOFT UK produces a range of publications for families affected by trisomy 13 (Patau's syndrome), trisomy 18 (Edwards' syndrome) and related conditions.

  • Your Unborn Baby was written to support families through a prenatal diagnosis.  
  • Your Baby gives information to families with a baby.
  • Trisomy 13/18 for Siblings gives information to children in an age-appropriate way and can be used as the basis for family conversations.
  • SOFT UK newsletters contain a range of information and many family accounts of their Trisomy experiences.

If you would like a printed booklet, or any further information, please contact us.

Your Unborn Baby Booklet

Your Unborn Baby was written by SOFT UK to provide a basis for discussions between you and your medical advisers. It explores the issues confronting parents after a prenatal diagnosis of trisomy 13 (Patau's syndrome) or trisomy 18 (Edwards' syndrome). 

You won't find any recommendations for particular methods of treatment as these should always be done in consultation with your doctor and other clinicians. But you will find plenty of information to help you towards making informed choices for you and your family.

You can download a copy of the complete booklet. Contact SOFT if there is anything you would like to talk about.


Your Baby Booklet

Every family is unique. What may be right for one child or family may not be right for another and parents can use these shared memories as a basis for discussion between themselves and their medical advisers. 

SOFT does not recommend particular methods of treatment, and new treatments must never be started or existing treatment changed without consulting your doctors. SOFT does not represent any political or religious groups.

You can download a copy of the complete booklet. Contact SOFT if there is anything you would like to talk about.


Sibling Support Booklet

A resource created specially by SOFT UK to support brothers and sisters through the experience of having a sibling with a Trisomy.

Funded by Jeans for Genes. 

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