SOCIAL isolation is a huge problem for many parents of disabled children.
Throw in a rare chromosome disorder, often a disorder that has no name, just a long, unfathomable code of letters and numbers, and the problem increases.
The everyday challenges which follow, the never-ending worries about the future, constant battles to make professionals and even your friends and family understand, leave parents feely confused and very alone.
To help raise awareness of these issues, Unique is running a Chromosome Disorder Awareness Week from 7-13th June.
Says a spokesperson: “The aim is to spread the word to ensure nobody affected is left feeling isolated and alone.
“Everyone needs their friends around them for support, no one should have to feel so desperately alone and yet hundreds of parents with children affected by a chromosome disorder are facing the hardest time of their lives on their own, being rejected by those they trusted most.”
Says an ‘Unique mum': “When my son was first diagnosed, friends suddenly stopped contacting me. I would see pictures appear on Facebook of the things they had got up to, things that before that point I had done with them.”
Unique, The Rare Chromosome Disorder Support Group, has set up a confidential Facebook group ‘Cafe’ which has grown rapidly to over 3,000 members.
It’s a virtual place where parents can ‘pop in for a cuppa’, vent, ask questions, gain support and also celebrate their child’s achievements.
The spokesperson added: “There is nothing like feeling understood and heard by a community of people who have shared similar experiences.
“It has become a lifeline to parents who feel invisible to the rest of the world, giving them a support network of friends who understand, don’t judge and help them make sense of what is happening to them.
“One mum recently told us: ‘I’ve found that I’ve lost a lot of old friends because they just don’t understand or want to understand my situation. I have made lots of valuable friendships since having my daughter and that’s what counts. The Unique Facebook Cafe group became my lifeline, my access to a wealth of knowledge and my greatest source of support. I soon became friends with three of the mums, we quickly realised we had the same sense of humour and shared a common bond… WE LOVE CAKE! These three women are my bestest, most-treasured and trusted friends.’”
Notes to Editors
Unique is an UK charity supporting families affected by rare chromosome disorders.
For further information, please contact: Dr Beverly Searle, CEO on 01883 723356/07702 585003, alternatively you can email Caroline Pocock, Fundraising Officer at firstname.lastname@example.org
Available on request
Case Studies and photos: we can provide details of families in your area willing to be interviewed about their experiences and the friends they have met through the Unique Facebook Cafe. Please contact us for details.
About Unique and how we help
- We inform, support and beat the isolation of anyone born sick and disabled by any chromosome disorder, their families and the professionals working with them.
- We offer a ‘listening ear’ telephone and email service to parents of a newly diagnosed child as well as professionals needing information to help them counsel and plan patient care.
- We link families living with similar conditions to share their experiences, offering invaluable mutual support.
- We hold one-day social events, study days and family conferences, bringing together families and professionals to further our knowledge of specific chromosome disorders and develop the means to offer improved supportt.
- We work to raise public awareness about chromosome disorders and we help families face the future with hope.
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