Thirteen Today

Our son Isaac is thirteen today. He was born at 7.37 am on November the 23rd 1998, changing our lives forever. Isaac spent the first two weeks of life in an incubator with unspecified breathing difficulties. At eight months, already wearing two hearing aids and having had several minor operations, he was rushed to Manchester Childrens' Hospital with hydrocephalus, had his head punctured and drained and a shunt fitted. A few days later he was diagnosed with Hurlers' Disease (MPS 1), a degenerative condition leading to death by the age of ten. The only partial treatment available was bone marrow transplant, which at that point had a fifty per cent success rate and a twenty per cent mortality rate. BMT has made major advances since then, in both success and mortality. Two bone marrow transplants followed in 2000, the second one successfully restoring the missing enzyme but leaving him with a host of issues and needs, and frequent hospitalisation. Since then he has had major spinal surgery, knee surgery, shunt removal and replacement, continuing bi-weekly infusions to replace his still absent immune system and a cochlear implant. In 2008 he contracted pneumonia, then meningitis (causing him to have a mini-stroke), which very nearly did for him. So turning teenage is a big deal for us and him not least because there have been times when he wasn't expected to survive the night, never mind reach teenage years.

Today he is a walking, talking, somewhat hyperactive, short statured bundle of energy who brings joy to those who meet him, and Isaac meets many people. He just approaches them and starts asking them questions. He is currently full of teenage hormones- his main interests are breasts, Manchester United, breasts, crisps (prawn cocktail flavour), Lego, breasts, ladies wearing make up and high heels, chips, chocolate and breasts. Not so different from the rest of us maybe, although he says exactly what he thinks whereas the rest of us can internalise some of our thoughts about these topics.

Happy 13th birthday sunshine. May you continue to beat the odds.

This was the last song the compilation tape played in my old dark green Ford Escort on the way to hospital just before he was born, sometime in the early hours of the morning thirteen years ago.

'A dreamer of pictures

I run in the night

You see us together

Chasing the moonlight

My cinnamon girl'

Still, I think, Neil Young's best song.

Cinnamon Girl