2017 marks our 5th National Eosinophil Awareness Week and yet, in many ways and for many reasons, this year may be one of our quietest yet. One of those reasons is that over the last 12 months, we have experienced a significant shift in the way that M’s doctors view his diagnosis and that change, along with the inevitable amount of growing up that is going on in our household at the moment, means that life has become about a lot more than just the label we’ve been handed to explain his medical condition. I’ll be honest, that transitioning medical opinion has been difficult to live with because it has challenged the very way we’ve coped with the last 11 years of our life and has demanded that we examine closely all of those decisions we’ve made believing them to be in the best interests of both our children and not just M. It has made us sit back and question whether we’ve been choosing and doing the right thing.
This seismic shift that we’ve been experiencing is not isolated to our experiences or even to our part of the world, but rather appears to be part of a nationwide change in the understanding, and even the diagnosis, of Eosinophilic disorders themselves. As a parent to a child with this diagnosis, the prospect of moving away from recognising Eosinophilic Disease as a genuine medical condition is a daunting one. Whatever title you want to attach to this little-recognised health issue, the hard facts are that those diagnosed with it are struggling and suffering on a daily basis and removing the validity of its name does not, and will not, remove the reality of the problem itself. The steps we have taken over the last 4 years since diagnosis have not always been easy ones, but without a shadow of a doubt, they have been ones that have seen much improved health for M at times when we have had to make what are unquestionably the toughest of choices.
Similarly, we are not the only family who has found itself moving away from the care provided by GOSH over the last couple of years – some have moved by choice, whilst others have had little or no say in the matter. In our case, our GOSH consultant and dietitian recommended we sought local input into his care because they had reached a point where they could find no explanation for why his body reacts as it does and felt that a fresh pair of eyes might be able to give us different insight into how to go on from here. The last 8 months have been extremely challenging for us all as our local consultant has made suggestions that we are not always 100% on board with and it has taken unbelievable courage on the part of all in our family to even agree to try new things 
that no-one really knows will succeed in the long run. The jury is still out on whether we are currently heading in the right direction with his care and truthfully only time will tell whether the decisions we are making this time round are the right ones or not.
Without any funded research into the complexities of gastrointestinal disorders, individuals like M will always be at the mercy of what can only be seen as an experimental approach, as diet, medicines and psychology are discussed and considered and tweaked to produce the best possible outcome on very much a “trial and error” basis. In our experience, we know that food plays a huge part in the way that M’s body behaves and the medicines he’s currently on appear to be doing their job of dampening down the body’s reactions to everything he eats. Likewise, we agree that there is a psychological element to it all and have had our concerns about the psychological impact of a chronic illness on his mental well-being. Sadly, where we have currently agreed to disagree with the medics is whether the psychology plays a bigger part than the physiology when it comes to M’s day-to-day health and responses. Yes, we know that stress can wreak havoc on the digestive system of just about everyone, but we will not be swayed in our belief that it is more than that for M. The hard facts of our 11 years with M show us that his health challenge is unquestionably a physical one and we will continue to fight for greater understanding of Eosinophilic disorders and how they affect everyday living for those diagnosed with them.
This week is about raising awareness of EGID and sharing our experiences – the good, the bad and the ugly – of living with it. For us, and for the families we’ve got to know who live with it, EGID is a part of our lives that we have to accept and learn to come to terms with, no matter what discussion is being had in the medical world. It might not be clear whether EGID is in itself the final diagnosis, or if it is simply part and parcel of a larger problem that is, as yet, unknown, but it is our reality and it shapes every step that we take.
This year we have decided to continue our support of the amazing charity, Over The Wall and their camps. If you’re able to donate even a very small amount, please follow this link to my Virgin Money Giving Page where your donation will help more children living with chronic illness like G and M by giving them and their families a chance to enjoy some much-needed time away from it all.
If there’s one thing the last few years have taught me, it’s that it is truly worth 
Today is the start of National Eosinophil Awareness Week 2017 (#NEAW2017), our fifth year of finding new ways to talk about EGID and telling those in our community, and beyond, about this disease. 
Junior school draws to an end, the Headteacher has agreed to support our awareness-raising campaign for the final time and is helping M to host “Dress as your Hero/SuperHero” for the day on Friday May 19th.
suitable replacement. Not only did Mike need to urgently replace a crucial part of his daily commute, but my Mum had also been reminding me that I needed to actively do something to buy myself the bike that she has bought me as a birthday present for 2 years in a row, and so we headed back to Halfords to see what we could find.
4 bikes, instead of the anticipated 2, meant an attractive offer that we just couldn’t turn down.
Easter weekend, and a piece of bad luck combined with a chance encounter led to the discovery of an absolute hidden gem that we wouldn’t have discovered under any other set of circumstances. G, M and I were enjoying a Saturday out and about, when an unexpected puncture disrupted our day and found us searching for the help of a Kwik Fit centre in the small North Somerset seaside town of 
My expectations were low and I had managed to pick up a pack of rice cakes that M could eat, whilst I kept my fingers crossed that I might be able to buy something that was not only safe for G, but that she’d eat as well. I could never have imagined the ultimate success story that was about to unfold before us.
to the Apple Tango in the fridge and a quick perusal of the can suggested that this would be a great option for him to enjoy alongside his plain rice cakes. Not an exciting lunch by any stretch, but I hoped that it would fill a gap as a temporary measure at very least.
cafe was able to offer a completely safe meal without any fuss, something that has never happened without the careful planning and implementation of strategic military-esque manoeuvres beforehand. M was thrilled to hear that he could eat a proper lunch alongside G and me and couldn’t wait for his plate to appear. The food when it came was absolutely delicious and the sight of 3 empty dishes was all the indication needed to show just how good that unplanned lunch was.
I had done a little research before we left home as I was keen to find somewhere new to eat and was hopeful that Mexican chain restaurant, 
gluten intolerance. G pondered the menu for a long time and struggled to reach a decision, not least because so many of the dishes include dairy as well as a spiciness that she would prefer to avoid. In the end, she actually ordered from the Kids menu, where she could have grilled chicken in soft corn tortillas. There were a few too many vegetables adorning her plate for her liking, but she did eat the rest in fairly quick fashion.
After a lengthy discussion with the restaurant manager, M opted for a double portion of grilled chicken, cucumber and apple, all washed down with a Virgin Mojito, although the last didn’t quite hit the mark. Our meal was nicely finished with a dairy-free hot chocolate for G and a coffee for me. We were once again disappointed by the lack of choice when it came to dessert and instead decided to give it a miss and head on to our final destination.
equally spellbound, even during the lengthy part dedicated to the story of Frozen. From everybody’s favourites, Mickey and Minnie Mouse, to Tiana and Prince Naveen from modern classic, The Princess and the Frog, there was more than enough to keep everyone entertained. The skating was superb, the spectacle fantastic and the songs had many in the audience clapping and singing along. G didn’t stop smiling the whole evening and it really was a Christmas present worth waiting for without a doubt.
I’m surrounded by reminders of this amazing organisation wherever I look, from the screen saver on my phone to the calendar on my desk at work and it’s reflected every time I hear G or M, or sometimes both, bursting into a song from their time away at camp.
On top of all of that, we also managed to squeeze in a trip to London for 4 and an evening spent celebrating the success stories from this year’s 
There were 5 very worthy 
Of course, we couldn’t just turn up on the day assuming that we’d be able to safely feed both children, so a preliminary phone call to not only book a table, but also run through all of our allergy requirements for the meal was an absolute necessity. We have been incredibly lucky in the past as we don’t always call ahead and have still found ourselves able to eat out as a family, but a special meal such as this one required a little forward planning. Our restaurant of choice was the marvellous 
tempura tiger prawns, though mine came with a soy dipping sauce. I would love to be able to share with you the plate of prawns that M was presented with, but my joy at being able to watch my foodie savour every single mouthful meant that I forgot to pull out my phone until that plate was cleared.
dairy-free alternatives for the savoury courses, dessert was a real let-down. The only choice readily available for G was sorbet, which she absolutely hates and when pushed, all the kitchen could offer was the apple crumble – without the crumble. We had heard that in the past, they had been able to go off-menu and cook a gluten- and dairy-free banana fritter, but we were told that they were no longer able to prepare that as an alternative. It was perhaps lucky that G and M were both full to the brim from the rest of the meal and didn’t really want to stick around any longer for pudding and so the rest of us willingly abandoned the sweet finale to our meal and instead travelled back to my Mum’s for a refreshing cup of tea.
7 years to diagnosis 