Since the day we took our first steps into hope house children's hospice, I knew that we would spend the rest of our lives fundraising for them at any given chance.
At the moment it feels like we are all take take take, and I suppose we are. We were referred and accepted for their services and boy do we need them.
I remember crying with Natalie when we found out that we had been accepted..... Do we really need the services of a children's hospice, I was thinking. Is George really that unwell? We knew that he was poorly and we were really struggling with him.
The hospice have done and continue to work tirelessly with George. It has taken a lot of effort to get him to where he is now, he's still not totally comfortable all day but we are worlds apart from where we once were.
George has attended hope house for regular respite, affording Natalie and I some much needed down time, even though the reality is, it just allows us to clean the house and reset ready to go again.
Symptom management stays have been really important to us. These stays enable the staff to monitor George throughout any significant drug changes to see how he reacts and have also allowed them the chance to better understand his complexities.
We have also had to utilise the crisis management service. Natalie and I were so run down and exhausted. We were barely able to look after ourselves let alone George as well. The hospice identified this through our regular contact and the superheroes took over.
Having grown up in Shrewsbury, hope house has always been known to me and in my eyes it was a place where poorly children sadly went for end of life care. I bet if you ask most people they would have the same thoughts.
In essence it is, but it's much more than that. It is a place that is allowing children to enjoy their time on this planet regardless of how short it may be.
It is a place that for the most part is full of joy and happiness, a place where people really want to make a difference and believe me they do!
Obviously the children are the stars of the show and rightly so. The hospice really does allow them to shine. I personally love lunch times there, not just because I love food but because this is a time where the children all come together as a group and it's lovely to see.
We as a family really understand the importance of hope house and without their services we dread to think where we would be right now. We want to ensure that families like ours continue to recieve the support of this amazing place and help raise funds to help with the operational side.
The hospice had organised a canal walk which Natalie and I were keen to do with George, but how was he going to be on the day? Would it be a good day or a bad day? We couldn't risk it. He's just to complex and we didn't have a contingency.
This is where the idea of George's challenge came about.
Fund raising is difficult and everyone has that chosen charity which has touched their life in someway. Times are also difficult for many financially but it's not always about the finances, even though we are trying to raise funds.
We wanted to do a challenge that was achievable but also a as the name suggests a bit of a challenge so that people would recognise our efforts. It also needed a degree of flexibility.
Running George's social media has opened me up to all sorts of ads and rubbish, but this is where the idea came from. There was an advert for a virtual challenge that popped up. I'm not going to lie, it was the fancy medal that you earn that excited me. I thought I like the look of that, we should earn one for George. I figured that it would offer a lasting memory. A piece of metal that would offer so much significance in years to come. It was aesthetically pleasing and would be a permanent reminder of George when he's no longer with us because the sad reality is that we will likely out live him.
As I looked deeper into the mysterious world of virtual challenges I found the Lands End to John O'Groats challenge. It was the longest, but the most relevant. The short ones were to short and alot of the others were based around foreign countries.
I figured if we did the Lands End to John O'Groats one we could talk to George about different parts of the UK as we opened up the virtual post cards and tracked our progress.
I pitched my idea to Natalie, she was well up for it. I had done the maths and worked out that if we were to complete it on George's birthday that we would need to average around 5 miles per day. We would typically walk 3, so this was a challenge but definetly achievable.
Fast forward a few weeks and we were still not signed up. The average became 7.5 miles per day by the time we signed up. Now we have a challenge!
We enjoy walking and the headspace it offers is better than any medicine at the moment so it's a great challenge but my head doesn't stop. We often talk about what our aspirations were as a family and the things we wanted George to achieve as he grew. This got me thinking further.
Walking 1084 miles with George is a pretty amazing achievement to look back on but walking local routes is boring so I kept thinking, how could we spice things up and make some even better memories along the way. With it being Lands End to John O'Groats and having our first family holiday booked for Cornwall, a real life visit to Lands End for a picture with the famous sign is a must. We would love to get up to John O'Groats at some point but that will have to wait a while.
We started with local landmarks and will do some more further afield. They are always a great photo opportunity and allows us to talk to George about the landmarks, but what could we do that was a bit different.
My initial thoughts were sport, rugby to be precise. Always having to think outside of the box, how could we get George involved in a rugby environment and help towards his challenge? Scrum practice is how! In my head I pictured George sat on a training sled shouting at the pack as they drive him forwards. A few messages and phone calls later and I quickly establish that we should be able to make this a reality.
Things are getting exciting I was thinking, now on to other sports.
I have a few other things in the pipeline but I'm not letting them out of the bag, you need to follow George's challenge for that.
Family days out is another big one. We haven't really experienced any yet so are hoping to do some short days out and get some photos and miles in.
There will be plenty of updates a long the way but I am also open to ideas, so if anyone reading has any ideas no matter how big or small I'd love to hear them and see what we could do. Ultimately we are trying to create as many amazing memories as we can whilst raising awareness and funds for Hope House along the way.
Our initial target was £1084, raising £1 for every mile walked. I keep banging on about how it costs £1300 per night for George's respite stays, so donating less than that feels pretty insignificant, but every little helps!
We have been out trying to support other hope house fundraisers, getting photos, starting initiatives such as swapping chocolate coins for donations of real coins and just basically having a really nice time chasing the same goal. It's great. Go team hopehouse.
The more photos we get and people that we interact with the more exposure we can give to hopehouse. George has a following of a little over 500 people on instagram. Not bad for a baby that can't even log on to his account. Social media is such a powerful tool for reaching a wider audience. Thanks to the efforts of my brother (and his contacts) he was able to have our challenge shared across Facebook by the comedian Jason Manford who has a following of 1.4 million people and founded the charity ninjas.
We feel so honoured that Jason Manford took the time out of his day to share this and as a result we have recieved donations from numerous ninjas. Infact it has been overwhelming. We quickly hit our target and have since doubled it. I am pleased to say that we are rapidly approaching that target but what's even more amazing is the potential reach. Obviously not all of his 1.4 million followers will read or share the story but if even a small fraction do, that could be a significant amount of people who could be potential donors and who now know of hope house!
We will work hard at keeping this momentum and I'm already thinking on to next year's challenges and goals.
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