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Sibling Helen speaks out

We asked siblings to let us know what it is like living with a CdLS brother or sister. Helen Young answered the call. This is her story.

Helen with twin brother David.
My name is Helen. I have a twin brother called David and a little sister called Lucy. David is eleven minutes older than me and has Cornelia de Lange Syndrome.

He was diagnosed at eighteen months and we spent most of our early lives in hospital (I even learnt to walk on one of the wards). David cannot speak and does not sign, instead he will sometimes point to an object that he wants or pick it up and bring it to you.


I think I am quite fortunate because, as we were born so close together, instead of having to change my life I have always lived like this. I also think that I am very lucky because I have had the experience of having to care for somebody, which is something that not many people of my age have. I have also had more responsibility and have had to grow up faster.

Sometimes though, life with David can be a pain because he has a mental age of about eighteen months old. When he is at home somebody has to sit with him at all times because he is very mobile and destructive.

This also means that taking him out or going on holiday with him is difficult because he needs at least one on one attention. Mum is usually always watching him and doesn’t have time to relax and enjoy herself, and she gets really worn out.

Most times David is like an annoying little brother. He stands in front of the television, he tears up paper and books, he eats videos and he likes to stick his hand in your dinner. (Mum says it’s a brother’s job to be annoying).

He wears a protective helmet when he goes out. He also has a wheelchair because he’s a bit wobbly on his feet sometimes and can’t walk very far. Lucy and I get really cross when other kids are rude and stare at him.

David and I will be 13 in the summer. None of my friends believe he is the same age because he only comes up to my waist. We don’t tend to invite my friends home as David has some really horrible habits. But even though he has his faults, he is my brother and I love him to bits!!!