Eighteen

At 7.37 am on the morning of November 23rd 1998 our eldest Isaac forced his way into the world, two weeks early. Today he turns eighteen. Some of you know his background. He was born with an incredibly rare genetic disease, Hurler’s Disease (MPS1), which saw him taken off to intensive care immediately and he didn’t come out for a week. Hurler’s disease is caused by a missing enzyme which leads to all kind of difficulties- deafness, learning difficulties, physical disabilities and gradual loss of functions to an early death. There is no cure. Aged eighteen months he went through two bone marrow transplants that have put some of the missing enzyme into his body, a treatment that has given him the life he has now. He’s had numerous operations for skeletal problems. One unforeseen consequence of the bone marrow transplant was that the chemotherapy used to enable his body to accept the donor material also destroyed his immune system which then failed to grow back. Aged ten with a weak immune system he got flu which turned into meningitis, which floored him. Back into intensive care and not expected to survive the night. Coma and eventual recovery but with his hearing completely wiped out. It’s been a long road.

But that’s only some of the story. He is in good health currently, goes to special needs 6th form college, has trips out with friends, knows more people than I do and is having a party on Saturday where we are expecting roughly 150 guests to show up. We are transitioning into adult services from children’s, both hospitals and social care, which for us daunting. He just gets on with it. The remarkable thing isn’t his continued determination to carry on against the odds or his resilience in the face of disability (though they are pretty remarkable). The remarkable thing is the connections he makes with people, the impact he has on them and the joy he gets from them.

Eighteen years ago I was totally unprepared for this- having a child is change enough. Having a disabled child is another world. Looking back now I’m not sure how we coped with some of the things he and we went through. But here we are. One of the things he wants the most on becoming an adult is to have a pint poured for him (which he won’t drink but it’ll be poured and sat with). So if you’re raising a glass of anything tonight, have one with us.

When I drove Mrs Swiss to hospital eighteen years ago the last song that played on the car stereo cassette player was this, Cinnamon Girl- still I think my favourite Neil Young song (which I don’t have on the hard drive right now).

‘A dreamer of pictures
I run in the night
You see us together
Chasing the moonlight
My cinnamon girl’

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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.

>I’m In Love With Your Daughter

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In 1990 Neil Young reunited with Crazy Horse and released the gloriously ragged Ragged Glory album, which included a cover of Farmer John (originally by 60s garage band The Premiers). Neil and Crazy Horse’s Farmer John is unbelievably good- big, crunchy, stupid, fun.