Unique – The Rare Chromosome Disorder Support Group offers specialist information, emotional support and networking for families with children and young people recently diagnosed by chromosome disorders, and the professionals who are working with and caring for them.
The Foundation has supported Unique – The Rare Chromosome Disorder Support Group since 2013 through grants totalling over £24,000. We have supported the helpline and email support services, a matching service to connect families, the development of an information library with important resources for parents of children with rare health conditions, and regional events for local families.
Individually, chromosome disorders are incredibly rare but collectively they are much more common. In fact one in every 200 babies is born with a chromosome disorder, many with severe learning and physical disabilities. Getting a diagnosis of a chromosome disorder for your child or young person can be a deeply painful, overwhelming and isolating experience and families’ worlds are turned upside down. A lot of the time doctors don’t know what the future holds for the child which can be incredibly scary. As a parent you want answers and that’s where Unique comes in, we understand chromosome disorders and can provide the much needed support and information.
Most parents’ first reaction following their child’s or young person’s diagnosis, quite understandably, is to ‘find’ another, older child with the same (or at least a similar) disorder as their child. While this might be possible for some, it still does not mean that the two children will develop in the same way. However, just talking to other parents with a child with a chromosome disorder can be a great relief and can help to alleviate feelings of isolation and “why me?”
Over the past four years we have organised a number of Regional Family Days. It is a chance for families to meet, connect and form friendships, both adults and children and young people. The grant we received from DM Thomas Foundation for Young People will fund a Family Day in Central London in February 2018. The children and young people we support almost never get the opportunity to come together with others who are just like them. The day will be informal and fun: there will be a children’s entertainer, face painter and a small amount of soft play, giving parents the opportunity to talk to one another. Based on feedback from previous days we know that the events are hugely successful and beneficial.
“Such an invaluable opportunity to meet families and share stories, only a special needs parent can understand the daily challenges another special needs family faces.” Karen, a parent of a child affected by a rare chromosome disorder
We would like to thank the Foundation for their support. It is greatly appreciated and makes a big difference to the work we do in supporting children and young people affected by chromosome disorders.