Last week Max Branch would have turned 13 years of age.  A real milestone – we’ll never know what it would be to have a 13-year-old boy doubtless smelly and non-communicative but ours, lovely and on his complicated journey to becoming a man.

That was never going to be Max’s story – from the moment he had begun he wasn’t put together right.  As I went through what I thought was a normal pregnancy his story had been mapped out – he was to come to us early and leave us shockingly soon at 2 months old, more or
less on his due date, almost like he’d never existed…..

But he did exist and he’s our son and we are very proud of him; his fight and his spirit in a little body that didn’t equip him with the faculties to make it to his first Birthday let alone his 13 year.  I can’t begin to describe the confusion the upset the bewilderment of those first few weeks in the neonatal unit, we'd never been parents before and suddenly on very different terms from those we had poured over in books – a perspex box, a set of tubes and flashing lights and amazing nurses seem to be carrying out all the functions you think you ought to be - 'when do I start being a parent?'.  You feel impotent, afraid and wretched with grief and exhaustion.

Our care was amazing – we were lucky – we ended up at Kings, exemplary in neonatal care by the standards at the time.  We left the hospital having held him for the first and last time as he died in our arms, not with our baby in a car seat, but with a small book with a lock of his precious hair that we were never going to stroke again and a small inked foot and handprint for us to remember him and his unutterable smallness.  Tragic yes, but we knew that everything that could have been done, had been done.

We experienced the rollercoaster of good days and bad days and the heart wringing hope and sadness that each 24 hours could bring. All the while an organisation called Bliss was in the background – the only charity in the country that focusses on advocating for neonatal babies.  On their website and through leaflets we found fundamental information that helped us understand our situation better when we couldn’t bring ourselves to ask a busy health professional or plainly forgot in the time allotted. 

Bliss are helping babies like Max with the aim of reaching each of the 90,000 neonatal babies born every year.  They are not only engaged in fundraising to provide more volunteers for units to support parents to care for their babies, lobbying government for better maternity/paternity leave but have set about a mission to improve care on units with their Baby Charter, a gold standard for family centered care on units well received by health professionals across the country.  So much has changed in the units since our time – the recognition of the importance of the role of parents in neonatal babies lives and the changes to their care and their environment on the unit, now scientifically proven to improve outcomes for them. 

So you see I am passionate about Bliss as a cause – I believe every baby and every parent of a baby at their most vulnerable time deserves the kind of care we had, to make sure their lives however long whether it is 2 hours or 13 years and beyond, has quality.  

I’m exceptionally proud to be a Trustee of Bliss these days and so I have decided to Brave it for Bliss. Those that know me will know I do a fundraiser most years for child related charities – but  this will be my last big personal fundraiser.  I have decided to walk 100k, yes, one - zero  - zero (like the Spartans but much tougher) The Thames Path Challenge (Putney to Henley) on 9/10 September to raise some serious cash. 

This is going to be my last fundraiser unless I decide to do something if I’m still ambulatory when we hit Max’s 21 Birthday. So please do give generously, this is a herculean task and I have been training hard –  I hope to complete this between 20-24 hours, so if you have missed sponsoring me the last couple of times because you forgot or didn’t get around to it and thought you’d catch me next time, now is your chance.  If possible you could donate a few years’ worth since I won’t be coming with the begging bowl again next year or thereafter.  Below is a photo - a list of what your money can buy as a guide.

Here is a video James has put together of Max’s life, a little window on our short time together - https://youtu.be/82VaWU6xqRQ help us celebrate his time with us, give generously and add to Max's Precious Star Fund. http://max-branch.muchloved.com