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.
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.
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.
Somehow it doesn’t seem real that another year has passed and we’re marking a certain young gentleman’s 11th birthday. When my challenging pregnancy resulted in a premature birth, I had no idea that this Japanese proverb would become the very mantra of our lives as a family of 4. Today we’re celebrating 11 years filled with love, laughter and the continued determination by our youngest to get back up each and every time life knocks him down.
whenever I came across any food or drink that would be suitable for either of the children. The thing is that for once in my life I wasn’t actively looking for safe food options, but the discovery of that first gluten-free sandwich triggered a level of excitement that would be completely incomprehensible to anyone other than those walking the very same journey that we do. And no sooner had I discovered that first little gem, than I started looking everywhere to see just how well G and M would be catered for should we find ourselves in the Big Apple in the next few years.
There, nestling amongst the other cold food options available, was this amazing gluten-free ham and swiss cheese roll and I was so impressed that I just had to take a snap. I’ve commented so many times on how difficult it can be to locate the gluten-free offering in cafes and coffee shops in the UK, so to discover this one so prominently on display and clearly labelled was just fantastic. Obviously, I really can’t comment on whether it tasted good or not, though I can assure you that the burgers Mike and I had were delicious, but to even have the option so readily available was a real breath of fresh air.
From that point on, my eagerness to see what other allergy-friendly offerings were available was back to its normal level and whilst I didn’t actively seek out restaurants that could serve freefrom alternatives, I kept my Allergy Mum eagle eyes on red alert to see what I could spot on our travels around this vibrant city. Our quick stop at 
which understands not only their need to supplement their income and take further performance classes, but also allows them to accept those last-minute audition opportunities whenever they appear. The food is good, but it’s the staff who really make this a dining experience like no other. Discovering a couple of gluten-free meals was a real treat, though I’m not sure they could really cater for the more complicated needs of a certain young member of our household.
I am a huge fan of celebrating birthdays in style and you will often find the birthday cards in our house hanging around for a good 2 or 3 weeks past the notable date itself. Unlike my husband, and possibly much to his disappointment, I 
We decided to travel with 
Our trip was understandably dominated by our sightseeing plans and we did pretty much everything we wanted with a few added extras thrown in for good measure along the way. I’d be hard-pushed to narrow down my favourite part as everything we did was gloriously marvellous in their own unique ways. Mike loved seeing the architecture of the city, from the splendour of the Empire State Building and the Chrysler Building, to the stunning beauty of the interior of Grand Central Station and the sheer engineering magnitude of the Statue of Liberty. One of Mike’s favourite parts was, without doubt, our Sunday spent on Ellis Island, where he was able to track down the immigration paperwork for when his mother and her family moved from Jamaica to Canada by way of NYC in the late 1940s.
I loved our wander through Central Park, both in the blazing sunshine and then again in the snow as we made our way to the 
7 years to diagnosis 