Tag Archives: charity giving

#NEAW2018: D is for Donate

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.

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Charity Cut

Whenever I write my blog, I am always conscious of not wanting to focus on any one emotion more than another, particularly when life seems pretty bleak to us. Yes, sometimes things feel overwhelming, but I know that in the grand scale of things life could be so much worse and I’m truly grateful that it isn’t. However, this is one occasion when I’m not going to apologise for shouting from the rooftops about just how fantastic both my children are in my eyes. They’ve both had brilliant end of year school reports and Stagecoach reports, which is a real testament to how hard they’ve worked this year, but this post is about something so much more than that and something of which Mike and I are incredibly proud.

In May, as part of National Eosinophil Awareness Week, M wrote to his Headteacher to ask if he could hold a “Dress as your Hero” day at school. Unbeknownst to me, M was invited to speak at one of the whole school assemblies about why he was running this fundraiser and took this opportunity completely in his stride. Both his class teacher and the Head have told me that he spoke confidently and with great articulation, able to clearly explain who Over The Wall are, what they do and the importance of these camps to him and to G. The school responded in amazing fashion and M’s hopes of raising around £100 proved to be a woeful underestimate of the final total.

Back at the start of the year, I wrote about our family’s New Year Resolutions  and mentioned that G had set herself a resolution that would be revealed in the fullness of time. It’s a real privilege to now share that resolution with you all. My gorgeous girlie decided that she wanted to cut her beautiful long hair before we travel abroad this summer and was keen to do it for charity if at all possible. So, for the past 7 months as G has been growing her hair as long as she could get it, she has been researching just how she could support a charity by doing so.

Two weeks ago, G faced her charity cut and had over 10 inches cut off to benefit 2 amazing charities. The 10-inch plait has been sent to the Little Princess Trust, who will use it to make real hair wigs for children across the UK who have lost their hair due to intensive medical treatments. Not content to leave it at that, G decided to join M in his fundraising efforts for OTW and asked family and friends for any sponsorship they were willing to give her to support her in her efforts. Regardless of any lingering nerves or uncertainties, G was excited to see her final look and I’ll be honest enough to say that we now have a teenage daughter that looks stunning and even more grown up than she did before. She really is rocking her new style:

Working together with this shared purpose, G and M have succeeded in raising more than a phenomenal £760  for Over The Wall, the charity that provides free camps for children with serious health challenges, their siblings and their families. As you’ll have read more than once on here, G and M have both benefited hugely from attending the Over The Wall camps and as a family we have chosen to support the work of this charity in every way we can. This really is a proud Mummy moment for me, seeing G and M be determined to raise awareness and financial support so that OTW can keep creating the magic they do every day at camp.

We are, of course, more than happy to keep collecting for this fantastic cause and you can add to the hard work of both children over the last couple of months by donating via our Virgin Giving website here. Thank you

And the money kept rolling in…

Every year when National Eosinophil Awareness Week rolls around, we start thinking about how we’re going to raise more awareness about EGID, particularly in the public eye. During that first year, our focus was all about our awareness as a family and understanding more about how his diagnosis with this rare condition was impacting on M’s everyday life. As time has passed, we’ve looked for different ways to spread the word, reaching out into the wider community and have found that our efforts have naturally evolved to encompass an element of fundraising as well. Whilst the focus of NEAW is rightly about otwmaking sure more people know about this condition and what it means to be living with it, and donations of time are as valuable, if not more so than those of money, we know that any money we can raise will make a difference to the charities we choose to support.

This year we wanted to show our appreciation for the amazing work done by Over The Wall in running camps for children with serious health challenges, their siblings and their families. The truly fantastic week away that G enjoyed at Easter made an incredible difference to her, perhaps even more than we realised at the time. During a recent conversation with G and M about the Allergy UK Hero awards, we got to discussing the reasons why we might nominate each other for an award. To my surprise G stated that my efforts at finding out about and then sorting out her week away at camp was the best example of how I had made a significant difference to her life as an allergy-sufferer and sibling to a chronically ill child. That comment, for me, sums up just how significant the opportunity to have time away from the stresses and strains of life at home with M and to just be a child really was to her.

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During May, I started to document how our fundraising efforts were going and the different opportunities I had found to raise even more for our chosen charity. We had fantastic support from M’s school, who helped him raise an incredible £81 for OTW and through stalls at local community events and generous friends and family members, we raised another £172. Even better, we still have two fundraising plans in the pipeline, both of which came as something of a surprise to me, albeit a wonderful one. The first came when we were part-way through NEAW16, when I received an unexpected phone-call from the Head of Year 7 at G’s secondary school. Thanks to the continued support from our local press and a well-timed article in the local paper, she had a proposition that overwhelmed me and almost rendered me speechless. Year 7 had an enrichment week coming up after May half-term and, as a lead-in to their week of activities, the year group would be having a non-uniform day on the previous Friday. Her suggestion was that the school would use the day to help us raise awareness of EGID and that the money collected on the day itself would be donated to OTW. indexThe reasoning behind this plan was simple and easy to understand: G and M. They wanted to show support to G as one of their own and, knowing how much she had benefitted from her week away and recognising her commitment to supporting M during NEAW, believed that this was the perfect opportunity to do it.

I was more than happy to agree to this proposal and G was soon on board too. She was asked to write a small piece about EGID, NEAW and OTW that would be shared during tutor time on the Friday morning and each tutor was asked to show their group the short film G and M had created for the week. A well-researched, well-written and fully comprehensive letter was sent out by the school to all families explaining EGID and the charity that the money given on the day would be going to.

This week a cheque was presented to G during the weekly Year 7 assembly for an amazing £280, or thereabouts. The Year 7 Head told me that there were several donations made that exceeded the suggested £1 because the funds are going to a charity that have already helped G and M – something I can’t thank my fellow parents for enough. This money will make a difference to Over The Wall and it’s great to feel that we’re giving a little back. It means that so far we’ve raised an astonishing £530, or thereabouts, which covers half the cost for a child to attend the OTW sibling camp. I don’t know what our final fundraising total for this year will be as there is still one event left to go in August, but I’m glad that we have been able to make such a success of our efforts so far.otw

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

D

imagesEver 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.  20150515_151847I’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:

Fabed needs you

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.