It’s hard to believe that we’re already at the start of May, which means that in just 12 days time, it’ll also be the start of National Eosinophil Awareness Week 2016. For me, every year seems to follow the same pattern:
- At some point in late February/early March I realise that #NEAW16 is approaching and think I probably ought to do something about it…
- Mid-March arrives and I finally get round to discussing with M and G what they think we should do this year to raise awareness of EGID and might even make some notes…
- April begins and I realise that time is flying past far quicker than I imagined it would and begin to mildly panic about getting started on our preparations…
- End of April and, depending on what I’ve managed to arrange thus far, I suddenly go into full-blown melt-down and panic mode as I realise that the start date is just around the corner and absolutely nothing is ready!
This year has been even more hectic than usual and not just because of the additional efforts needed in coping with M’s broken leg and what looks to be a rather nasty flare-up of his EC as a result of it. Between the children and I, we’ve determined to make this year’s Awareness Week bigger and better than ever before, which meant starting much earlier than usual too. In the past week I’ve organised, arranged and pencilled in dates for various events and whilst some will be happening ahead of May 15th, there are others planned for the week itself. Our current plans include:
- a stall at our local Scouts’ May Fair, raising awareness and money
- an article in our local paper all about our plans and an update on where M is a year on since the last Awareness week
- yet another interview on our local BBC radio station, who are willing and delighted to have me in talking all things EGID for the 3rd year in a row
- M and G have written, illustrated, filmed and directed a brand new video for #NEAW16, which I will be posting a link to in due course
- M is in discussions with his Headteacher and is hoping to have display boards up in the school hall or library during #NEAW16. He has also planned some lunchtime games to raise some money for Over The Wall, our chosen charity for this year, and wants to show his presentation during an assembly too
- a stall at our local market at the end of #NEAW16, again an opportunity to get information out there about EGID as well as fundraising once again
- Mike, G and I have all committed to “Eating like M” for the week, which is the first time that G has wanted to be fully involved and will require lots of inspirational cooking from me
- Finally, I have committed to attempting to post a new piece of information about EGID, be that fact, photo or update, via my FB and Twitter feed throughout May – and have given fair warning that I’ll be doing
so!
Over the next few days, profile pictures across FB and Twitter will slowly turn purple as those families living with EGID around the world start to raise awareness of this chronic illness. It won’t just be me posting facts and information to share with families and friends about how it impacts on everyday life, but others will be doing it too. So, if you see a post, or a blog, or an update that particularly resonates, either from me or someone else, please share it on and help us reach another person who has perhaps never heard of EGID before.
We have decided to support Over The Wall and their serious fun camps through our fundraising this #NEAW. If you’re able to donate even a very small amount, you can follow this link to my JustGiving Page and help us to help OTW make a difference to another child with a chronic illness and their family.

M’s broken leg required some significant amendments to our original plans, but we were determined to get the family, wheelchair and all, to the event, held near Regents Park, London at the rather impressive
head than me and was our nominated driver for the night. The traffic eventually started to move, we crept past the accident site and soon were back up to speed and on our way without me completely losing my cool. We stopped just once and Mike, G and M were all able to nip into the service station toilets to glam themselves up for the evening. I was too anxious about our timings to take 5 minutes out to change myself and the following hour or so was filled with moments much reminiscent of Dirty Dancing – remember Baby changing on the back-seat of Johnny’s car? – as well as hysterical giggling from M as I contorted my body into unbelievable positions to don my own new outfit.
for the evening and the awards presented by celebrity chef, Antony Worrall Thompson, who gave what has to be the quote of the night that “..free from people should not be seen as niche people but normal people..”, which was great to hear. It was wonderful to see so many creative and innovative producers receive commendations for their hard work and the winners were all deserving in their categories. It was good to remember some of the fantastic new foods that I had tasted and wonderful to see G so excited about the gluten- and dairy-free offerings available that her own mini fist-pumps could be seen as she heard who the winners were. The full list of winning entries can be found on the
We’ve still to track down a box in our local supermarkets for G to try, but I’m even more determined to get my hands on some now that one of my favourites has won the overall title.

If you live in the UK, you can’t help but be aware of the current problems faced by the NHS. The continuing
I saw it in the frankness awarded to Mike and I during the December debacle, when we asked for an honest opinion about his future health and what we could expect; and it was given.
Thanks to past experience and my somewhat controlling approach to always having a supply of E028 in the house, I started chasing about when we could expect our next delivery whilst there was still a good amount of stock in my dining room and spent the next 40 minutes being pushed from pillar to post as I tried to track down who I needed to speak to and unpick exactly what had happened. When I finally established what I had to do, it was my wonderful GP’s surgery that I turned to and their fantastically competent staff. With the help of 1 receptionist, 1 member of office staff and the invaluable pharmacist, we eventually got M’s prescription sorted and marked as an ongoing monthly medication. They phoned, researched, ploughed through reams of medical notes and faxed until it was all sorted – and all with the attitude that they wanted to help, were willing to help and were happy to help, and a ready smile that reassured me I wasn’t being too much of a problem in their already busy day.
were fortunate to go to one and the photos and comments about it posted by their Mum, Annie left me determined to find out more and see whether M might similarly qualify for a place.
It was a week to be herself, not defined or viewed in her role as M’s big sister, and encouraged to take time to focus on herself without worrying about M and how he would feel.
Discos, team games, inter-team challenges, morning singsongs, new activities, skills learned, old favourites and even a talent show sum up G’s week away.
M was reluctant to admit to missing having G around to play with and torment, but his move to sleep in her bed every night she was away revealed the depth of those feelings he didn’t want to show.
During my judging stint at the
I know that M occasionally takes a peek at what I’ve been writing and G has expressed a passing interest in getting more involved at some point too. Writing these diary entries for the Foodsmatter newsletter would give them a voice to express and explore their own attitudes, opinions and feelings about life where EC and food allergies are ever-present.
Some months their entries might be a joint effort and for others, one might end up taking the lead with little or no input from the other, The responsibility of monthly articles is theirs, and theirs alone – I will not be stepping in if they leave it too late or can’t agree on what to write.
Even better, that upward trend continued this past weekend when, as Mike prepared some toast with lemon curd for my breakfast, my mind was drawn back a few summers to when I realised that I could make dairy- and soya-free
The flavour is very sharp and not overly sweet and M has loved every mouthful, demanding it on a near daily basis for either lunch or a bedtime snack. G says she enjoys it too, though I’m certain she won’t be asking for it on anything like as regular a basis as her brother. Most importantly, it provides a break from the dry mouthfuls of rice cakes that M has become accustomed to and that, in my world, is absolutely priceless.
That incomparable insight is what almost makes the challenges of M’s health worthwhile, for whilst I would give anything for him not to have to live with a rare illness like
My blog has simply been an effective way to put all of our experiences into one place, hopefully with some useful pointers for others in the same shoes and, by doing that, to create my very own, very personal resource.
Beef is actually the next on our hit-list of foods to trial with M, but when this recipe for vegan Yorkshire puddings caught my eye, posted somewhere that I can’t quite remember, I knew that, inclusion of beef or not, adapting this to a M-friendly version was high on my list of priorities.
The
I made some MEWS-free
After some frantic, yet focused internet research, I found that it was theoretically possible to replace the yeast with a mixture of baking powder and lemon juice and so decided to give it a go.