Following on from Adam’s story below, I thought it would be useful to share the information given to us by Maxine at Rainbow Trust. It really highlights how every penny helps them to help others
Rainbow Trust supports families who have a seriously ill child. Family Support Workers provide individually tailored support to each member of the family for however long they need it. This could be taking a family to and from hospital appointments, listening to a parent’s concerns or taking healthy siblings out for the day. It’s only with the help of fundraisers like me that they are able to raise vital funds which enable them to continue to support families in need.
How donations will help Rainbow Trust to support more families:
£24 provides an hour’s vital support to a family with a terminally ill child, giving them quality time together
£154 transports the whole family to and from a hospital appointment in a Rainbow Trust vehicle
£1650 supports a family with a terminally ill child for a whole year.
So, even if it’s just a pound you found down the back of the sofa send it our way and we’ll pass it on
Hello dear reader,
Thanks for coming and checking out what Iain and I are up to in July 2017. This blog site should be a funny, uplifting and interesting place to be over the next few months.
I wanted to pause and inject a serious note, briefly, in explaining why we are riding for The Rainbow Trust.
In 2008 my wife Kate and I were joined by Iris, our first child. She was a pure delight, and when she was six months old we decided that a week camping in Scotland was a good idea for a holiday.
Typically for a Scottish summer we returned home with stinking colds. Iris did not get better, on the evening we came home she collapsed and we found ourselves being rushed through our local A and E.
After a midnight sprint through town in an ambulance and another transfer to Kings PICU we were told that there was a mass growing on her liver, and to prepare for the worst. A genius surgeon operated after a week of waiting and watching, he resected her liver along with what we would later find out was an aggressive Rhabdoid tumour.
She was still alive but with a year of chemotherapy at Great Ormond Street to deal with.
It was then we were introduced to Mary at The Rainbow Trust.
With no car we were travelling into town by train, or expensive car sharing schemes – a member of our home care team heard about this, and referred us to Rainbow. The party line is that they support families with children with life threatening and terminal illnesses. What they really do is send an incredible person to help you and your family. We got Mary.
They work hard to make sure your family support worker is well matched to you – and we all just clicked straight away. Mary would get us to hospital, help with shopping trips, make sure we knew what was going on, and generally ease the pressure.
A tiny Lancastrian, she’d phone and announce herself ‘it’s Mary love’. She will always be Mary-Love to us.
We were driving home from GOSH one morning – I had left Kate and Iris for another week of treatment, and was feeling quite flat. Mary knew exactly what to say, or how to lift a mood. ‘Did I ever tell you about the time I was banned South Africa?’ she asked. It transpired she had spent years writing to Mandela, and the apartheid government wrote her a shirty note telling her to never visit. A genuinely funny person, who understood others.
For the next year Mary would turn up at our flat early in the morning, transport them to hospital and bring them back a few days later. She was a grateful constant in our lives.
Iris finished her chemo, and normal life resumed. She would go in for monthly scans, to check her liver. For a while everything was alright, until one month they spotted something on her liver. Test after test after test were carried out, and we were given the worst news. Her cancer had returned, the chemo had not worked, and there was nothing we could do.
We took our little girl home to face an unfair and uncertain future. Mary remained there for us.
Months past, and Iris remained well enough – we had our final holiday in a much loved corner of Suffolk. We decided that we would care for Iris at home, that she would not go into a hospice. With the right mix of GOSH, local care and Rainbow support we were able to give her that.
Iris died quietly at home, surrounded by the people she loved, in October 2010.
What The Rainbow Trust do is incredible, they allow families to focus on the important things, to have time with their child and not to sweat the small stuff. The mundane and everyday is not important at that point, your focus is required elsewhere. That we were given that opportunity is something for which I will remain ever grateful.
And that I why I am going to mount my trusty steel steed, and along with my dear friend Iain, ride like we’ve never ridden before, to raise money to allow other families that same important time.
So I got a call from Danielle at Skyline Events today, confirming that we are definitely on the list to participate in next year’s event. I have to say, a little surge of adrenaline went through me when she said we were on it…. there really is no going back now.
Lots of things to get done including getting our GPs to sign us off as being fit enough to participate!
I made us a little logo to adorn our various social media and Just Giving pages
I think we may end up using that on our jerseys and bikes.
My Just Giving page is now live at https://www.justgiving.com/fundraising/fbob-iain and I don’t think Adam will be too far behind
Update – here’s Adam’s page https://www.justgiving.com/fundraising/adamproops
So we’ve done it. Two slightly podgy nearly 40somethings have signed up to do the London To Paris bike Ride in 2017.
I’m filled with both excitement and trepidation in equal measure but we have a year to prepare and I’m in a lot better shape than when I did the London to Brighton ride after 6 months of cycling.
We’re going to raise money for the Rainbow Trust Children’s Charity and hopefully we can raise a lot of money for a smaller, yet still as important, charity.
The actual journey starts on the 19th July 2017 and finishes under the Eiffel Tower on the 22nd July 2017 taking in Calais, Abbeville and Beauvais en route to the capital. This will be the story of that journey and the preparation that goes with it.