Help Aron and others this CdLS Awareness Day

Text FRIEND to 50300 to donate €4

My name is Sandra White and I’d like to tell you about Cornelia de Lange Syndrome Awareness Day, which takes place today, May 12th. Aron, my eldest child, is 14 and has Cornelia de Lange Syndrome. CdLS is a rare genetic disorder affecting around one in 30,000 births. It is caused by a random change in one of at least seven genes. It isn’t inherited – anyone can have a CdLS child.

Aron is 14 years old and has a wicked sense of humour.

Aron is small for his age, he is considered to have a mild form of CdLS and is intellectually delayed. He has learning difficulties and language delay. He also has gastro reflux and attention deficit hyperactivity disorder. He attends a special needs school and is involved in a social and recreational club for people with intellectual disabilities. Thankfully, he is a happy young man with a wicked sense of humour.

Tom (aged 3) and Leo Varadkar raising awareness of CdLS.

The CdLS Foundation UK & Ireland is a family support organisation. They organise conferences around the UK and Ireland where families get together and can meet experienced doctors and specialists – on a one to one basis if required – who share their knowledge and expertise and advise on any challenging issues we have. These include seizures, reflux, behavioural issues, self-injury, speech and language issues, hearing problems, cardiac problems, diet, etc. The conferences also bring us the latest CdLS research being conducted in universities and keep us updated. At the Dublin conference, we decided to have an Ireland Coordinator, a voluntary role where one of the parents would link in with and represent families around Ireland. We now have each other’s contact details, we chat as a group on Whatsapp and we are organising a family day in September for all the families. We have 24 families in our Irish group (excluding Northern Ireland) but we know there are other families out there who have not yet been in touch.

What’s happening on CdLS Awareness Day?

CdLS Awareness Day is on May 12. We want to raise not just awareness but also fundraise to support the work they do for us all. The advice from the professionals at the conferences has been invaluable and has actually changed the quality of our lives. CdLS is a little known condition and we want to inform both the public and health professionals about the syndrome. Cork City Hall will be lit up in purple for the weekend and the Lord Mayor is hosting a reception for the families on the Friday. RedFm will be there with their jeep patrols, and Cork Foundation – a unique social enterprise fund – in Cork have been a wonderful support and have given us their Text to Donate facility. CdLS supporters can now Text FRIEND to 50300 to donate €4. (CdLS receives a minimum of €3.25. Service Provider: Like Charity. Helpline: 0766805278) The best thing with all the support is that because we have no budget and no outgoings and all our help is voluntary, every cent we raise goes straight to the CdLS Foundation. To find out more information about CdLS, please read the information below or visit www.cdls.org.uk/or find them on Twitter @CDLSUKIreland and Facebook.