Tag Archives: National Eosinophil Awareness Week

United we stand

Yes, you guessed it, today is:

and signifies perhaps the hardest challenge we’ve taken on for EGID awareness week, ever. This week Mike and I are standing in solidarity with M and with all those other brave souls out there who have to battle with EGID every day and have no chance to opt out when things get tough. For the past 2 years, I’ve documented how we’ve followed M’s diet for the week, restricting our diets as he has to restrict his and even drinking the occasional glass of Neocate Active to get a glimpse into that aspect of his life.

When we first started planning our activities for this year’s awareness week, I briefly considered eating like M again, but dismissed it, thinking that the limitations of 3 ingredients and a litre of E028 on a daily basis might just prove to be too much for both Mike and me. However, fast forward a few weeks to my preparations for my newspaper interview and I revisited the idea of “eating like M” and wondered if actually this might be something we could achieve. I chatted it over with Mike, debated whether we could do it and, both being keen to give it a go, decided this would be our diet for the week. Each day will be filled with 3 meals of rice, chicken and cucumber prepared in a variety of ways and Mike will even be drinking the litre of E028. I have undertaken this with careful consideration of my own T1D and will be keeping an even tighter eye on my blood sugar management to make sure that I stay fit and healthy during the week. I have also opted out of the E028, but will be partaking in a pint of Neocate Active everyday to show willing.

We’re not on our own either as there are other parents, family members and friends who will be spending some or all of this week eating like their loved ones. Trust me, it’s not an easy decision to make, but is a great way to raise awareness and get conversations started, which is reason enough to stick to it for a week. I am filled with admiration for just how well M has coped with such a bland diet for so long and have been struck with the harsh reality of how much pain he must have been in for years to be able to cope with these limitations just because it’s helping him feel better. So tomorrow when you’re tucking into your bowl of honey nut corn flakes or a bacon roll for breakfast, or sitting with your feet up dunking a chocolate biscuit into your cup of tea, or perhaps even enjoying a plate of fish and chips for tea, spare a thought for M and the others like him who are eating a restricted diet right now or may not be able to eat anything at all. This week it really is a case of “All for one and one for all“.

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

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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.

“So much time…

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...and so little to do. Wait a minute. Strike that. Reverse it…”

– Willy Wonka, “Charlie and the Chocolate Factory” (Roald Dahl)

This past week has been busy and there’s still lots more to do, not least of which is a proper blog post. However, the reality that is choir rehearsals,..SATS revision,..sunflower growing,..Anglo-Saxon house building,..SATS revision,..CAMHS appointments,..food-trialling,..SATS revision and May Bank holiday trips to Legoland Windsor for “Star Wars Day” as well as time spent prepping for EGID awareness week with Powerpoint presentations to perfect and conversations with local media to be had, means that this week’s posts have gone by the wayside, so instead here’s a small photo round-up to give you a taster of all the fun we’re having: