Contact helps small charity continue vital support for families living with rare condition

Monday 15 February 2021

Soft UK, a small charity that supports families with two rare conditions called Trisomy 13 and 18, is one of 67 small local groups around the country which have been awarded a grant by Contact to help with their work supporting families who care for children with rare conditions or additional needs during the pandemic.

Children born with both syndromes have an extra chromosome in every cell in their body, which causes a variety of developmental and health problems. Both conditions are extremely rare, affecting about 1 in every 4,400 births, and are life-limiting.

Soft UK will use the grant money to reach up to 120 families affected by Trisomy 13 and 18 by increasing the capacity of their support volunteer team and offering virtual one-to-one support and online sessions for specific groups like expectant parents, parents caring for a child with the condition, dads and grandparents.

Jan Fowler from Soft UK says: “Parents expecting or caring for a medically fragile child often talk of feeling isolated and alone. Having to deal with these challenges in the middle of a pandemic, when the usual support networks, may not be easily available has hit many of the families we support hard.

“We trialled virtual events to bring parents and families together. This has been a great success and we now have more planned including during Trisomy Awareness Month in March for parents who are currently expecting a baby affected by the conditions and are really struggling to deal with this diagnosis for their baby during lockdown.

“We are delighted to be awarded a grant by Contact which will help us continue providing sessions like these on a regular basis for our families.”

Mum Taiba Sheikh, who recently attended a Soft UK Family Zoom call, says: “Joining Soft UK’s virtual call felt liberating, to be able to share my experiences with the newer parents who were online on the day. It felt nice to talk to people and not to feel alone as this pandemic has forced us all to do.”

Grants like the one we awarded to Soft UK have been made possible thanks to a match-funding partnership between Pears Foundation and the Department for Digital, Culture, Media & Sport (DCMS), and forms part of the Government’s £750m emergency Covid-19 funding charities package. As one of Pears Foundation’s trusted long-term partners, Contact was chosen to award and distribute each grant – worth between £5-15k – to individual support groups to ensure funding gets to frontline organisations and their communities.

Find out more about our rare conditons work

We have information about rare conditions on our website.

Our A-Z of Medical Conditions has information on hundreds on conditions, including information on symptoms and possible treatments. It also includes details for support groups, which can be an invaluable source of condition-specific information and support.

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