told by mum Julie.

This handsome chap was born on 5th November 1998. A wonderful, if unexpected, addition to our family. When the midwife handed him to me I said, “Look at those tiny little ears! How come he’s so small? Only 7lb 12oz when Georgia (my daughter) was 9lb 8oz!” “Don’t be silly, Mrs Wootton, he’s perfect.” She replied

Max was so perfect that he was in intensive care three days later with necrotising entero-colitis, which is gangrene of the small intestine. This happened because his catastrophic heart defects (PA, VSD & MAPCAs – later described as incompatible with life) meant his oxygen saturation levels were so low that his bowel died and he had no thymus gland, so he lacked an immune system, all resulting from a common genetic disorder called 22q11.2 deletion. He died of sepsis in multiple organ failure on 1st March 1999.

We learned a great deal in a short space of time. Things like the difference between an ileostomy and a jejunostomy (not a lot distance-wise), it’s difficult to entertain a 4year old in ITU (colouring pens run out very quickly) and babies don’t cry in ITU. Also, being famed as the most complexly sick child in Birmingham Children’s Hospital is not a title to which to aspire.

Following Max’s death, we established Max Appeal, the national charity for people with 22q11DS. I then became a trustee of CHF. A word of advice to prospective trustees; attend meetings else the rotters might vote you in as chair in your absence! We’ve met some truly wonderful and inspiring people, and I’m not one for sham hyperbole.

We’ve been to many interesting places, been stuck on trains with loads of conference display clobber, sat on motorways in traffic jams, even run half marathons and all sorts, and continued to learn so many things which I find fascinating but most people glaze over and ask if I’d like a top up of wine. We have acquired a good, well possibly mediocre, skill at not snorting and laughing but smiling and nodding when people say things like ‘having a family is something that we’ve factored in to our life trajectory’. Happy for those that do actually manage to pull it off!

We have two other children; Georgia and Archie, now both grown up, in terms of age. We do tell them frequently that children are smelly, loud, messy and expensive (and that’s when we’re being flattering) but however much trouble they’ve been, Max has caused us so much more and changed all of our lives irrevocably. And none of us would have it any other way.

If you have been affected by any of the issues raised in this content you can contact info@chfed.org.uk or 0300 561 0065.