Tag Archives: Donate

NEAW 2016 – Giving from the heart

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]

 

Advertisements

NEAW 2015 – The Round-up

Last week was a busy week.  We just about managed to pause for breath along the way and achieved far more than we thought was possible.  Having taken a couple of days off from my blog – well I thought you’d probably had more than enough of me last week – I wanted to revisit NEAW 2015 to give a round-up of all our activities:

11030831_828235363934315_6504625663623229869_oE for Educate – I appeared on local radio, there was an article in our local newspaper about NEAW and even a follow-up article this week to talk about what we did. I blogged daily and posted regular updates about our life with EGID, achieving 600 views of my blog during the week as well as numerous shares on both FB and Twitter.

D for Donate – With the help and generosity of friends, family and fellow music lovers, we raised a fantastic £260 for FABED.  Thank you so much, I know that money is going to a great cause and will make a difference to EGID families who need their support just as much as we do.

U for Unite – WE DID IT!  Mike and I survived a week “eating like M” and discovered just how difficult a challenge it is.  I was filled, yet again, with absolute awe and admiration for M’s ability to eat meal after meal after meal consisting of nothing more than chicken, rice and cucumber.  I’m also incredibly proud to be able to share with you that G also did her bit on the Friday and ate “mostly like M“, with just a little bit extra of goats cheese and fruit to keep her smiling during lunchtime at school.  It’s the first year she’s asked to join in our challenge and I’m so impressed that she managed to stick it out without a wobble.

1529734_826685834089268_6472897324569407860_oC for Change – I hope we managed to change people’s attitude to and understanding of EGID during the week.  It was great to see the hashtag #morethanfoodallergies trending across FB and Twitter because that’s the key point I wanted to communicate last week: that whilst M struggles with food, his allergies are only a very small part of a much bigger picture.

A for Awareness – We raised awareness in everything we did.  Pink ribbons adorned our clothes, pump backpacks and hair, FABED awareness bands could be spotted around our wrists and M shared his video with the world.  It has had nearly 400 hits on YouTube, which made M’s week and something that started as a small project to encourage him to communicate his feelings about his illness morphed into a fantastic tool that allowed him to actively take part in raising awareness this week.

11265424_10152776813631123_3399504883350731420_nT for Thanks – I said my thanks and expected nothing more, but received some lovely compliments back from those of you reading and sharing my blog.  I’m just a Mum trying to do the best I can for my children and not always getting it right, but it was very nice to be told that I am “…the supermummiest mummy of the lot…” especially by someone who’s not even a family member and therefore under no obligation to believe that to actually be the case!

E for Engage – It may have been the hardest blog post to write for me, but M and G proved that they could engage with their school-mates in the most impressive of ways.  M presented his video at school throughout the week and had a fantastic response.  At the end of the week, I received this lovely and completely unexpected e-mail from G’s teacher to tell me about her class’s response to what M had to say:

M came to visit us with his presentation earlier on in the week and I was amazed, not only by the presentation, but also by his maturity and bravery.  He was just amazing and a real inspiration to us all.  G was also fantastic – helping answer some of the children’s questions and supporting M in the process.  They are both absolutely amazing – a big well done to them and your whole family.

And that just about sums up NEAW 2015 for us, so it must be time to put our feet up for another year…well, a Mum can dream, can’t she?!feetup

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.