Tag Archives: donation

Virtual Events – 7Y2D COVID-19 Diaries Week 6

Somehow we find ourselves at the end of yet another week in lockdown and, as I continue to listen to the daily government briefings, it’s hard to imagine when lockdown will start to ease and what that might even begin to look like. Nor do we really know when things can begin to return to even some semblance of what we now consider as life before coronavirus. Here at 7Y2D HQ we continue to try to follow a routine each day with G and M, who start with a morning of school, stop for lunch and then spend the afternoon outside or doing other activities such as playing board games or practising dance routines. Being stuck at home for 6 weeks has started to take its toll a little on everyone, so this last week has seen us joining in some virtual events that reflect activities that we would do normally do in our everyday lives.

First, was last weekend’s 2.6 challenge – a charity initiative to replace the annual London Marathon. Now, I’m not going to pretend we have, or ever have had, any aspirations to take part in the marathon itself, but we are avid fundraisers and this challenge was a great opportunity to get both children flexing their brain cells to think up something new to do. Our charity of choice was, of course, the fantastic Over The Wall, focus of our fundraising for several years now following G and M’s experience at their camps. The 2020 camps have had to be cancelled due to coronavirus, but they are seeking to #savethemagic and launch “Camp in the Cloud” for all camp applicants instead.

From last year’s indoor skydiving to G’s dramatic hair cut a few years ago, we’ve tried our hand at a lot, so it took some serious consideration for both children to dream up a new challenge. G quite quickly settled on 262 sit-ups (well a marathon is 26.2 miles after all) and eventually M chose to attempt 262 seconds in plank. Neither managed their challenge in one sitting, but they did it and should feel rightly proud that, even during a pandemic, they have found an alternative way to support a charity that has supported, and continues to support, them.

Our second virtual event of the week was yet another annual one, this time the awards ceremony for the Free From Food Awards 2020. Usually held in London, instead the fabulous organisers of the awards took to a virtual ceremony, which started with an amazing Zoom “drinks and nibbles” ahead of the main event itself. With over 80 participants at one point, the Zoom breakout rooms proved a great opportunity to network a little and meet some new faces as well as spotting old familiar ones from afar. The awards ceremony is always a glamorous affair and so the whole family decided to dress up for the occasion. Dresses were donned, make-up applied and jewellery was carefully picked out to compliment the outfits. I even convinced myself to put on a pair of heels for the first time in weeks, though I will confess they didn’t last for the entirety of the event!

G and M put to good use some of those cooking skills they’ve been honing over the last 6 weeks and produced an excellent free-from buffet, fit to rival that usually enjoyed after the winners are announced. We didn’t have many of the gold winning items* at home, though I did enjoy the dairy- and soya-free chocolate-dipped strawberries that were beautifully crafted with a little help from Mike and took me back to my confectionery judging in January, what now seems like practically a life-time ago. All in all, has been a good week and the introduction of these new activities added some much-needed variety to what has quickly become everyday.

*you can read more about the big success stories of the #FFFA20 here and can even experience the ceremony itself by watching the presentation here

Hair today…

#NEAW2018: D is for Donate

Leave a reply

May 21: D is for Donate

There’s nothing I hate more than spotting a charity canvasser on the street and I’ll happily confess that I instantly become one of those individuals who speed up and drop my eyes down to avoid drawing too much attention to myself if I can help it. It’s not that I’m not prepared to donate to charity – oh how ironic this post would be if I was – but I am definitely not a fan of being pressured to sign up to an ongoing commitment to any one charity whilst out and about doing other things. Part of my problem is that I hate to say no to people and always end up feeling very disingenuous as well as guilty when I come up with a reason why I don’t want to set up a regular donation on the spot.

A cash donation can help, of course it can, but these days I don’t really know what charity to suggest when it comes specifically to making a financial contribution to support those diagnosed with EGID. There are no charities in the UK currently working on research into gastro conditions and few investing time and energy into supporting families living with the consequences of this challenging diagnosis. As long as gastrointestinal disease remains the “poor” cousin to so many other life-impacting conditions, there is little chance of much progress when it comes to finding ways to improve the day-to-day life of those living with it.

However, donation is about much more than just the money. Your time, your care and your support can make an incredible difference to a family living with chronic illness and the impact should never be underestimated. When someone takes 5 minutes to ask how M is doing, and, even more importantly, asking how G and the rest of the family are too, that effort is priceless. At the moment, we seem to be a state of status quo with M’s health which is fantastic, but there is also a sense of overwhelming ennui when it comes to our ongoing relationship with our local hospital and M’s gastro consultant. Taking the time to talk to me about life apart from M’s EGID makes a big difference and should never be seen as inconsequential. We teach M constantly that there is so much more to life than his illness and it’s important that we hold on to that truth and don’t get bogged down in the mundane.

There are, of course, a million and one charities who need financial support and it’s a challenge to choose the cause that’s not only closest to our hearts, but needs that money the most. This year we’re not actively fundraising as part of NEAW, mostly because I only changed jobs a month ago and haven’t found the time to be more organised, but thanks to M’s bold cheek, we have a small fundraiser planned for the end of June. Last year, he asked the founder of their Saturday dance school if this year’s end of year concert could be a fundraiser for the amazing Over The Wall charity and he and G are now working hard on their presentation to introduce the evening. M is thrilled to be attending an OTW Health Challenges camp again this summer and we continue to be extremely grateful for the care, support and opportunities they have given both children. Both OTW and my new role with our local air ambulance have shown me so clearly that whilst the money is important and enables both charities to continue doing their fantastic work, volunteering with them has equal value. At work our volunteers are an integral part of our workforce and the truth is, quite simply, that their daily contribution to the running of the charity cannot and should not ever be underestimated.

NEAW 2016 – Giving from the heart

2 Replies

I can’t deny that this week has been a busy one, in fact, given we started our #NEAW campaign at the start of May, the whole month has been non-stop and it’s not showing any sign of slowing down just yet. The last couple of days have been particularly amazing and I’m still buzzing from the success of a combination of planned events, chance e-mails and an unexpected phone-call.

Today has been a real highlight for me. A few weeks ago, M asked the Head of his school whether as well as showing his EGID video as part of a whole school assembly during #NEAW, IMG_0460[1] he could also organise some break-time games to raise some money for Over The Wall, our chosen charity for this year. Having received the go-ahead, it was all systems go at 7Y2D HQ and M recruited some of his friends to help run the games on the day, whilst I put my thinking cap on to come up with some games that would appeal to the children as well as raise some awareness of EGID. We settled on 3 different games: Guess the name of the dog – he was called Phil after those pesky eosino-phils that cause all the problems; Guess the number of sweets – these were Foxes Glacier Mints as they are the only safe sweets M is able to eat and were crammed into one of his feeding bottles and the Eosinophil Treasure Map – find the eosinophils on the body to win a prize. I arrived at school ahead of morning break to set up the room and my helpers, including M in his wheelchair, turned up just ahead of a throng of excited children, eagerly clutching their money ready to have a go at the game of their choice. It proved to be such a roaring success that the queue was out of the door and I was asked if it was possible to come back for another 30 minutes during the lunch-hour, which of course I was delighted to do. In the end, I spent an hour and a half talking to a number of children about M’s condition, what we were raising money for and answering their questions as they thought of them as well as supervising the games. The school raised an amazing £81.30 for the charity and I am incredibly grateful for the support of parents, children and teachers alike who made the day such a huge success.

IMG_0464[1]

There are some more amazing fundraising opportunities coming up and I will be updating my blog as each happens.

Of course, we are delighted with the success we’ve enjoyed so far, but the giving is about so much more than the money we’ve raised for a fantastic charity. Earlier this week, FABED asked for a donation that comes from the heart and will have a long-lasting impact: the gift of time. The gift of 5 minutes to read more about EGID; the gift of the time it takes to share a blog post or information on social media to educate those around you about this illness; the gift of spending time talking to a family living with the condition to understand what they’re going through and maybe even offering some time to help them out, even in a small way. Never underestimate the effect of a friendly smile, a sympathetic word or the offer of a cup of tea. To an EGID parent that could be the action that saves their sanity on that day or helps them feel that they’re not fighting this battle on their own. If you can give a small donation that’s great, but your time is priceless.

As well as raising awareness of EGID this week, we are also fundraising for Over The Wall Serious Fun camps. If you are able to donate, even a small amount, that donation with make a big difference to children like M and G, who benefit massively from these camps. You can donate via my Just Giving page or the link on the side of this page. Thank you!

IMG_0467[1]

Today’s blog post is brought to you by the letter…

1 Reply

Ever had that feeling that you’re appearing in an episode of Sesame Street? Sadly my children have absolutely no idea what I’m talking about, observe my poor attempts at impressions of the Count (1…ah ah ah…2…ah ah ah…etc) or Cookie Monster (me want cookie!) with complete and utter disdain, and yet it reduces me to giggles each and every time. I am, without a doubt, drifting into the realms of “embarrassing Mum” behaviour just in time for G to advance into her teenage crisis years.

But I digress; today’s letter, D, stands for Donate.

This week is primarily about raising awareness of EGID, rather than rattling our buckets asking for money, but the harsh reality for children and adults living with EGID is that there is little promise of finding improved treatments until further research into it is carried out. At the moment in the UK, there are no research projects listed specifically for EGID and less than 1% of all medical research funding is allocated for gastro research. Kate, over at The Recipe Resource, talks about the need for increased funding for specialised research, especially for medical research in children, in her recent blog post, “Why we need a culture shift on medical research in children – for Eosinophilic Awareness Week” and it’s definitely worth a read.

Don’t get me wrong. I’m not expecting the money we donate to change the face of medical research just yet, that sort of change will have to happen at a much higher level than my meagre pounds can help me access. However, where these donations can make a difference is to charities such as FABED, who really are small fish in the big pond of the charity world. I’ve talked many times about how much support is given to individuals and families by FABED and the image opposite, which I also posted on yesterday’s blog post, shows just some of the many ways they support their members. We’ve benefitted from most of them. Our amazing trip to Legoland 2 years ago was organised by FABED and gave Mike and I the opportunity to talk to other parents living with EGID: some who were further down the line in their journey and full of years of hard-earned expertise to share; and some even newer to it than us, who were overflowing with endless questions. More importantly, it enabled M and G to meet other EGID children and their siblings. They could compare war wounds and stories; and both came away feeling less isolated in their struggles.

The on-line community is a veritable hive of activity and no question is too stupid or concern too small when it comes to these amazing people. They have extensive knowledge and experience that they are more than willing to share, and when they don’t know the answers, will send a virtual hug to let you know you’re not on your own. The support doesn’t stop there and this week members have also been sharing photos, images and videos with each other to help raise awareness for EGID. The emotional and practical support offered has been a lifeline for us more than once and the emails, text messages and phone-calls received from FABED members when we’ve been going through tough times are worth far more than their weight in gold. This is one such video, which proved to be all the inspiration M needed to finish his own:

So, what can you do today?

With the help of the fantastic choirs I sing with in our community’s Singing Project, we raised an amazing £180 at Saturday’s concert and if you’re able, any small donation you can give to FABED will make a massive difference and will be gratefully received. I have set up a JustGiving page for this week and all money will be going to this cause. You can access it by clicking on the image below:

And if you’re not able to help financially, that’s ok too. Please just keep spreading the word and remember that every single person you tell about EGID is one more person who can help support people like M.

7 years to diagnosis

Searching for an answer