22q Days of Awareness Raising

Today begins 22 days of raising awareness for 22q11 deletion syndrome, ending on 18th May when families across the world will group together for a special day out at zoos across the world. This day is called "22q at the Zoo"

As some of you already know, my eldest son Samuel has 22q11. Unfortunately we cannot take part in 22q at the Zoo this year as we will be travelling back from a holiday, but I will be joining in the raising of awareness over the next 22 days.

Samuel was diagnosed at age 4 after his speech failed to develop properly. He was found to have a submucous cleft palate (often seen in children with 22q) and this led to the blood test for 22q11 and subsequent diagnosis.

22q11 deletion syndrome basically means that Samuel is missing a tiny part of chromosome 22. The q and 11 identify the specific piece of chromosome 22.

As 22q11 is a syndrome it means that children may suffer from all, some of only one specific difficulty related to the syndrome. These may include: heart defects, speech and language delay, short stature, feeding difficulties, learning difficulties, mental health issues and behavioural difficulties including varying levels of autism and ADHD.

It complicated! We are 7 years post diagnosis and I am still trying to get my head around it.

Over the years I have drawn support from speaking to other parents of children with this syndrome, and Max Appeal, a charity who support children and families affected by 22q11. Here is a link to their website if anyone would like to read more: Max Appeal Website

I've blipped a collage of photos of Samuel, some old, some new.