Picture this:

Get married to the love of your life, have a great time then
comes the amazing news you’re going to be a dad, works going well, great friends, everything’s OK. 9 months later, the baby arrives and after the initial shock of it all you settle into family life and everything’s good, but wait, 18 months have passed by and the baby is not crawling yet or making eye contact, what’s wrong? Probably nothing but just go to the docs to be sure, referred to the hospital for some tests to rule anything out, the phone rings, the doctor wants
to see you, you go in

Then it happens:

“Your daughter has a life limiting condition called Battens disease, she will never walk, never talk and will lose her eyesight, life expectancy is around 7 years old, I’m very sorry”

Folks, there’s no feeling like it, you’re a dinghy in rough
seas, heads everywhere, struggling to take in what your hearing, fighting for breath!

FACT, this has happened today, as you read this, other families
in Scotland will have had their world blown apart with similar news! it really is the cruelest thing you can imagine.

At this time, we were introduced to CHAS (Children’s Hospice
Association Scotland)

They run Robin House and Rachel House Hospices and offer
palliative care for young people and respite for families FREE OF CHARGE

When I went for the first time I was full of dread, sick in
the pit of my stomach with nerves, what a pleasant surprise I got, how wrong I was, I was greeted with smiles and kindness which really surprised me, the kids get to escape from the day to day and the Parents get some time to themselves
for a few hours or days, whatever the need is. Kids have access to video games, swimming pool, and there’s always a huge amount of arts and crafts and activities going on, all provided by full-time staff and volunteers.

Even at the end of our journey, our daughter lay at rest in
the rainbow room instead of a funeral parlor, it makes a difference trust me,
CHAS helps with everything, even providing counseling if you want it.

I hope reading this you get some idea of what they do, you
can go onto the website to find out more:

www.chas.org.uk

 All this costs money,
it’s a never-ending task!

My friend Stuart and I are going to walk up Kilimanjaro in
September and are looking to raise a minimum 15K for CHAS

We are both unfit, love beer, love hockey and love
hamburgers!!, we are going to give it all up (except the beer and hockey!) and get into some sort of shape to get ourselves up to the top of the hill and raise money and awareness for CHAS

If you can, please donate to our fundraising page, if you
can’t you can follow our progress on twitter

Thanks for taking the time to read

Simon and Stuart