Quality of Life

Helaina’s been visiting us today, bringing her parents with her: my cousin Colin and his wife Kath.

I have written about Helaina before: she has Costello’s Syndrome, which is a rare genetic condition with a predisposition to many health problems: heart problems, curvature of the spine, cancer – Helaina has had cancer twice – speech problems and slow development.

Helaina learned sign language when she was two and began speaking when she was five or six. Now she is twelve, though at first glance looks much younger because she is tiny. Here she is with my mother who is only four feet ten herself:

Emily plans to study Helaina’s speech as part of her English Language A-level and Helaina and her parents kindly allowed us to record her this afternoon.

It takes a bit of getting used to, talking to Helaina, because although her speech is indistinct (she has problems forming the words) once you tune in to it you realise that what she is saying are the comments of a much older child, and she has a very mischievous look which is never far away.

She loves books and spent a lot of time looking at some of Emily’s. Here she is concentrating on an electronic reading game:

There is a speech “window” in development and, if children miss it – such as the rare cases of children who have never been spoken to – they simply can’t catch up. Helaina, however, is catching up – perhaps because, when little, she couldn’t form the words to speak but nevertheless listened to everything that was going on.

So, a child with multiple handicaps and two very dedicated parents. But, having been handed what at first appears to be a really terrible hand in life, Helaina has also been given some compensation for all her problems. She has a very endearing, outgoing personality and an excellent sense of humour. Everybody likes her.

Here she is with the Communist – she readily agreed to pose for the photograph.

Problems, yes. Quality of life? Certainly. Look at that smile.