Tag Archives: Education

Finishing the summer in style

With Christmas now just 6 weeks away – eek, where has this year gone?! – it’s hard to believe that I still haven’t finished telling the tales of our busy summer. You’d have thought our fairly last-minute plans to fly out to Canada for 2 weeks would have been more than enough to keep us all occupied, but we had even more adventures squeezed in to the final 10 days of the summer holidays before school started back.

We had the return journey from hell with a disrupted flight thanks to a group of rowdy French exchange students, who got into arguments and near fist fights with both the airline crew and other passengers, just rows away from the seats we were sitting in. I have never been so upset on a flight and am just grateful that the children were more entertained by the films they chose to watch, than scared by the events going on around them. This behaviour continued in the Dublin airport terminal and didn’t help the stress of a delayed flight back, which meant we missed our onward flight home by mere minutes. Mike and I were tired, grumpy and so fed up by all we experienced, that we complained long and hard, which fortunately secured us a later flight home, though it was 12 hours later than originally planned, and a hotel room for the day, which gave us the chance to catch up on some much-needed sleep, something that had been impossible on the plane.

We were both back at work the following day, whilst G and M went to my Mum’s for the last 2 days of the week. We rushed through the washing and then found ourselves packing once again for a weekend in Liverpool to see the Terracotta Warriors exhibition that we had missed when we visited back in April and what was, perhaps, the highlight of M’s summer holiday – a week at Over The Wall. Our weekend in Liverpool was a great success, especially as we managed a return trip to both of the fabulous freefrom restaurants we had discovered on our previous visit, something both children were desperate to do. The morning spent at the World Museum was well worth it and we all enjoyed seeing the amazing Terracotta Warriors that were on display. It’s hard to believe that it’s been 17 years since Mike and I first saw them in Xi’an, China and fantastic to introduce G and M to this incredible ancient tribute to China’s first emperor. They also insisted we explored every other part of the museum we could and given the rather miserable weather, it was a great way to entertain them whilst away from home.

From Liverpool, we headed back South, dropping M off at the Midlands OTW Health Challenges camp for what we had no doubt would be an amazing week for him again. I cannot begin to describe the incredible benefits that M gets from OTW and why this charity deserves all the support and praise we can possibly give it. Once again the camp chefs outdid our expectations and created meals for M that went beyond our wildest dreams – and yet again apparently put my attempts to shame. This year, however, I can take great solace in the fact that M shared with the chef that I put my recipes on this blog and he not only took a look at them, but also used them to help cook treats for M whilst he was at camp. Just as with his stay at the South HC camp 2 years ago, M was exhausted after a week of unbelievable fun and challenge and just about managed to survive the very final bit of our seemingly endless summer adventures.

OTW’s Midlands camp is based just minutes away from the National Memorial Arboretum near Lichfield, Staffordshire and it seemed a shame to be so close and not stop there for a relatively quick visit. The NMA is somewhere I’ve long considered visiting and we chose a beautiful day to make the trip. Both children were about studying the World Wars at school and with 2018 marking the centenary of the Armistice, it seemed fitting to spend some time walking the grounds and exploring the many memorials that are found here. It was a remarkable and moving place to visit and I’m glad we made the effort to, despite M’s reluctance and overwhelming tiredness from a week away from home.

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Scottish Engineering

Looking back now, 2 months on since our Scottish adventures, I can’t believe just how much we did in what really was so short a time. Having “done” Glasgow, our next major destination was through the beautiful, snow-tipped Cairngorms to Inverness, but not before we had stopped off to experience 2 unmissable sights – the Falkirk Wheel and the Kelpies. When we first started planning our trip to Scotland, so many family members and friends told us that we absolutely had to visit the Falkirk Wheel and warned us to pre-book our tickets to make sure that we didn’t miss out that we both took heed and booked our Easter Sunday day out.

The engineering wizardry of the wheel, which was the world’s first rotating boat lift when it was opened in 2002 to link the Forth & Clyde and Union canals, had M absolutely hooked from the moment we showed him the website and he couldn’t wait to actually experience it in person. The transition from the lower canal to the higher one (and back again) is unbelievably smooth and you hardly realise you are moving 35 metres into the air on a remarkable man-made structure, planned in Lego and powered by the energy required to boil just 8 kettles for tea. Without a doubt, it is an impressive sight to observe and having done our “turn” on it, we settled in at the cafe for a light allergy-friendly lunch accompanied by a side order of a great view of the wheel doing its thing as we ate. 

The tour guide on our boat gave us so many facts and figures about the Wheel that it seemed almost impossible for the children to absorb many of them and yet, even now, they still remember the ones that particularly fascinated them whilst we were there. As we looked out from the top canal towards the Firth of Forth, we heard about the Kelpies just a short drive away and knew without a shadow of a doubt that we absolutely couldn’t head further north until we had taken our horse-mad girlie to see these amazing structures.

Built in a phenomenally short space of time in 2013 to form a gateway to the eastern entrance to the Forth & Clyde canal, this monument encapsulates the mythical beauty of the water spirits of Scottish folklore whilst forming a fitting tribute to the horse-powered heritage of Scottish industry. These 30-metres high horse heads are simply breathtaking to see and although we didn’t have time to enjoy the Easter sunshine with a walk through the Helix parkland project, we all relished the opportunity to stretch our legs and even perfect some dance steps on the way to the structures. All in all, it was a perfect way to spend a peaceful Easter Sunday with family and one that perfectly combined so many varied aspects of the Scotland we were slowly discovering each day.

#NEAW2018: E is for Engage

May 26: E is for Engage

It’s a late post tonight, much later that I would have hoped, but I’ve been busy helping out with an anniversary celebration for the charity I’m now working for. It’s been a long day, but a fab one and I’m delighted to now be able to bring you my final post for NEAW.

This week has been, as I expected, a quiet week when it’s come to raising awareness of EGID. There were no big fundraising plans, no local radio interview and no article in our local paper. The children didn’t present anything at school this year and I didn’t plait pink ribbon into G’s hair or attach awareness ribbons to their school bags. Mike and I have stuck to our commitment to eat like M for the whole week and that has certainly led to a lot of conversations with my new work colleagues about M’s diagnosis…and how to pronounce “Eosinophilic”!

I’ve written a blog post every day this week which have been read and shared on by you all and whilst the daily posts will finish now this week has come to an end, I will continue to post an insight and an image on my social media channels right up to the end of month. Life might get quieter on the EGID front for most of you, but please remember that it will continue to be a permanent and unavoidable fixture in M’s everyday.

Thank you for engaging with us this week; for walking part of our journey alongside us and all I ask is that you keep helping us fight the battle to raise awareness of it.

#NEAW2018: T is for Thank

May 25: T is for Thank

To everyone who has supported us over the years. To those who have provided listening ears, shoulders to lean on and helped wiped away tears. To friends who have given time, energy, a chance to get away from it all and, most importantly, a large drink when it’s most been needed. To the communities that have walked each step of the journey with us, whether local, worldwide or virtual. To those who have been part of the blogging process over the last 5 years and continue to read my posts and share them on.

To our family and friends. To our wonderful children. To Mike.

Thank you xxx

#NEAW2018: A is for Awareness

May 24: A is for Awareness

Today is all about raising awareness for EGID. At home we’ve been working on putting together a presentation for the end of June, when G and M will be introducing Over The Wall at their performing arts’ school’s end of year fundraising concert. We are, as so many others around the world, huge fans of the 2017 smash hit and all round wonderful film “The Greatest Showman” and the song “This is Me” had a particular resonance for the whole family. M and I chose this track to be the backing track for their OTW Powerpoint presentation and I decided to adapt what I’d already made for this year’s NEAW to raise more awareness.

#NEAW2018: C is for Change

May 23: C is for Change

The dictionary defines change as “to make or become different” or “an act or process through which something becomes different“, but what does that really mean in the context of raising awareness about a rare disease?

There are so many things that need changing when it comes to EGID, some of which we can actively work towards achieving and others which can be nothing more than a pipedream at the moment. Educating others about what EGID is and how it affects those diagnosed with it will hopefully bring about a change in attitude in both the community surrounding M and the wider medical profession. Even though this often feels like an uphill battle, it is an achievable target and something we should all keep working towards, chipping away slowly at the seemingly indestructible walls that surround EGID as a valid diagnosis. Those changes in attitude will help M feel less isolated by his health problems and more confident in being the unique individual he is despite his EGID and not because of it.

The 12-year road we’ve travelled since M was born has seen many changes and there is no question that there will be many more to be traversed as he grows towards adulthood. He’s gone from an active, can-eat-everything toddler, through a stage of being a tube-fed child taking 13 medicines multiple times a day to now being a tween eating 9 foods on a regular basis, taking 4 medicines plus a multi-vitamin each day and thriving. The next few years of teenagedom will undoubtedly bring a myriad of changes to be navigated, mostly thanks to those pesky hormones, and which will hit us in ways we can’t even begin to imagine. Who knows how treatments and medical breakthroughs will change as he gets older and the best change we can hope for is that his doctors will find a way to improve his quality of life beyond our wildest expectations.

What are the changes that M would most love to see happen?

  • To be eating as “normally” as possible. What he wants when he wants and with no repercussions at all
  • To be able to go without all of his medicines, especially the E028 drink, and not worry that a reaction could be just around the corner
  • And to not feel different, or alone, or set apart from his friends because of a condition that he can’t predict or control, but can just manage as best he can

What I want is not really a change at all. I want him and G to remember that they are able to live life to its fullest, loving and embracing every moment of it and grasping every opportunity that comes their way and making the most of them all.

#NEAW2018: U is for Unite

May 22: U is for Unite

Over the years, our primary focus for “unite” has been on spending the week, or a part thereof, “Eating like M“. Mike and I are embracing it fully again this year, much to M’s delight, but I have to wonder whether following his restricted diet for 7 days really does enough to show him that we’re standing in unity alongside him. A natural consequence of our choice is that those we work and spend time with during this week will inevitably ask questions, which obviously gives us both a great opportunity to talk about EGID and start to educate the uninitiated, but I keep returning to the question of whether M truly feels a benefit from us standing shoulder to shoulder with him for such a short time.

Of course, the truth is that, for us, every day living with EGID, even though we are not living with the diagnosis and reality of it ourselves, is a day spent supporting M through what has been some of the toughest times he’s had to face in his 12 years. We have lived through and survived the most difficult challenges, but we are still not really living in unison with him. My 30+ years of living with my own chronic illness, Type 1 diabetes, means that I do perhaps have more of an idea of the experiences and angst that he faces each day than others and I know that that truth has brought M some comfort in his darkest moments. I can’t make EGID disappear, or allow him to eat completely normally once again – or, at least, not without some pretty catastrophic reactions that would take their toll and require a huge amount of time to recover from – but I can offer a level of understanding and empathy to him, along with an ever-ready cuddle, kiss and encouraging words from Mum, which may or may not be gratefully received depending on the occasion.

This week, social media, and Facebook in particular, is swamped with the CURED banner for NEAW, which promotes worldwide unity in the EGID community, with all of those living with EGID holding hands and pulling together to seek a cure. It is an image that has resonated with me, especially given the ongoing tumultuous relationship between EGID and the medical profession here in the UK.  Despite M’s objections to the word CURED (which actually stands for the Campaign Urging Research for Eosinophilic Disease) because, as he rightly points out, “…there isn’t a cure yet for EGID and this makes it seem as if there is…“, he too is a fan of the sense of inclusion rather than isolation that is reflected in the words. The realisation that EGID affects others just like him across the world is sinking in and we all find some comfort in the truth that other countries are investing in the area of gastro research, which includes seeking a deeper understanding about EGID and how it works.

Whether its eating like M this week, or sharing the same meals with him at different times throughout the year; supporting M when life isn’t going as smoothly as it could, or cheering him on when he’s talking EGID to those around him; or actively helping both him and G when they’re fundraising for the charities that have worked tirelessly to support them over the years, all of it is standing in unison with M during NEAW and for the rest of the year. Because unity is not just for a day or a week or even a year, but it’s for a lifetime and it’s a commitment I’m willing to make to the EGID community, not just to him.

The question is, are you?

#NEAW2018: D is for Donate

May 21: D is for Donate

There’s nothing I hate more than spotting a charity canvasser on the street and I’ll happily confess that I instantly become one of those individuals who speed up and drop my eyes down to avoid drawing too much attention to myself if I can help it. It’s not that I’m not prepared to donate to charity – oh how ironic this post would be if I was – but I am definitely not a fan of being pressured to sign up to an ongoing commitment to any one charity whilst out and about doing other things. Part of my problem is that I hate to say no to people and always end up feeling very disingenuous as well as guilty when I come up with a reason why I don’t want to set up a regular donation on the spot.

A cash donation can help, of course it can, but these days I don’t really know what charity to suggest when it comes specifically to making a financial contribution to support those diagnosed with EGID. There are no charities in the UK currently working on research into gastro conditions and few investing time and energy into supporting families living with the consequences of this challenging diagnosis. As long as gastrointestinal disease remains the “poor” cousin to so many other life-impacting conditions, there is little chance of much progress when it comes to finding ways to improve the day-to-day life of those living with it.

However, donation is about much more than just the money. Your time, your care and your support can make an incredible difference to a family living with chronic illness and the impact should never be underestimated. When someone takes 5 minutes to ask how M is doing, and, even more importantly, asking how G and the rest of the family are too, that effort is priceless. At the moment, we seem to be a state of status quo with M’s health which is fantastic, but there is also a sense of overwhelming ennui when it comes to our ongoing relationship with our local hospital and M’s gastro consultant. Taking the time to talk to me about life apart from M’s EGID makes a big difference and should never be seen as inconsequential. We teach M constantly that there is so much more to life than his illness and it’s important that we hold on to that truth and don’t get bogged down in the mundane.

There are, of course, a million and one charities who need financial support and it’s a challenge to choose the cause that’s not only closest to our hearts, but needs that money the most. This year we’re not actively fundraising as part of NEAW, mostly because I only changed jobs a month ago and haven’t found the time to be more organised, but thanks to M’s bold cheek, we have a small fundraiser planned for the end of June. Last year, he asked the founder of their Saturday dance school if this year’s end of year concert could be a fundraiser for the amazing Over The Wall charity and he and G are now working hard on their presentation to introduce the evening. M is thrilled to be attending an OTW Health Challenges camp again this summer and we continue to be extremely grateful for the care, support and opportunities they have given both children. Both OTW and my new role with our local air ambulance have shown me so clearly that whilst the money is important and enables both charities to continue doing their fantastic work, volunteering with them has equal value. At work our volunteers are an integral part of our workforce and the truth is, quite simply, that their daily contribution to the running of the charity cannot and should not ever be underestimated.

#NEAW2018: E is for Educate

May 20: E is for Educate

When M was finally diagnosed with EGID 5 years ago, it came at the end of a long, relentless and frustrating battle with the medical profession to have our concerns heard and acknowledged; and not simply be dismissed as over-protective parents; or worse. By the time the diagnosis was actually formalised, I had done a lot of my own reading around the subject and already knew as much about the condition as was readily available online. In the 5 years since that hospital appointment, we have found ourselves continually having to educate those around us, including the medics, who know little to nothing about what is becoming an increasingly controversial diagnosis, especially when it affects the lower GI tract as M’s does.

EoE, or Eosinophilic Oesophagitis, is becoming more widely recognised and the diagnostic criteria for this condition are well established, not least thanks to the continued research of Dr Marc Rothenberg and his team at Cincinnati Children’s Hospital. When it comes to the rest of the GI tract however, there opinion is very much divided. There are no clear guidelines as to how any of the other Eosinophilic disorders should be identified and diagnosed; and as the recent documentary about GOSH revealed, there is definitely no consensus on how they are best treated. One of the biggest problems facing children like M is the minimal investment into the research of gastrointestinal disorders and the fact that there is absolutely none into paediatric gastro research. With the credibility of EGID as a “real” chronic illness under debate, consultants all too often veer away from it as a possibility and either move towards a more psychological diagnosis or simply shrug their shoulders and leave these individuals to cope on their own, with little or no regular input.

Whether you want to lay the blame of M’s health issues at the feet of eosinophils, or mast cells, or indeed any other type of white blood cell that could be causing his body to attack itself and react to more foods that you can even begin to imagine, I don’t really mind. I’m not one to hang my hat on labels particularly, especially when that label has no meaning for the greater proportion of the people that M comes into contact with on a day-to-day basis; but I also know that being able to put a name to a problem lends a sense of genuineness to his symptoms as well. As a family we’re not able to walk away from the reality of living with this condition day in and day out because every week we experience the effect of it. I’ve said it before, I’ll say it now and I will no doubt say it many times in the future:

The symptoms that M suffers are very real and can be hugely distressing at times.

M is absolutely your average 12 year-old. He has attitude, he knows it all and he could argue that black is white with the best of them. He loves computer games, fantasy stories and endlessly watching Star Wars or Marvel films. He runs around and is noisy and can drive even a saint up the wall at times. He doesn’t look ill and I’d defy anyone who doesn’t know him to pick him out as the “sick kid” in the line-up. But that’s the face he presents to the outside world and reflects the attitude to his health that Mike and I have worked hard to engender within him.

What you don’t see is the worn out child who can’t move from his bed at times because of the pain and lethargy that accompany a flare-up. You don’t hear the quiet heart-to-hearts late at night, when he’s struggling with yet another reaction and doesn’t understand why it’s happening to him again. You don’t feel the despair that hits hard after another food causes soul-destroying disappointment because it’s clear that he just won’t be able to eat it without problem. And you can’t imagine the heartbreak of seeing the quiet acceptance that he won’t be able to go to a friend’s sleepover or away on school camp because of the possibility of suffering an embarrassing symptom that none of his friends really understand.

That is the truth of life with EGID and that’s the reason we will always endeavour to educate those who come into contact with M as well as the rest of the world in whatever way we can.

A Brewing Storm

Yesterday a social media storm hit the EGID world, especially for those of us who are, or who have been, under the care of Great Ormond Street Hospital over the last few years. The reason? A story published by The Guardian newspaper on Saturday night, which has raised questions about the treatment of patients of GOSH’s gastro department following a huge number of complaints from parents and successive reviews of care carried out by the RCPCH (Royal College of Paediatrics and Child Health) since 2015.

As a parent to a child with an EGID diagnosis and one that was given by GOSH at that, this story is heart-breaking and yet one that I know needs to be told. Whilst M has never been subject to the “aggressive treatment” described in the reports published by The Bureau of Investigative Journalism (see here and here), we have struggled with our own issues rising from some of our experiences during inpatient admissions at GOSH and I have always been open and honest in sharing these via my blog. We have made complaints, challenged M’s consultants and spent time talking to the Chief Exec to try and make sense of it all and improve the way that, not just M, but other children have been treated whilst they’re there.

Last summer I shared my fears about the huge question marks that have been hovering over the EGID diagnosis for a while and how they could impact on the treatment and care that M receives from the medics in our lives. This week my fears grow even greater as the TBIJ documentary investigating these allegations about GOSH will be aired on ITV1 at 10.40pm this Wednesday, April 18th. Whilst I know that the documentary is seeking to reveal the truth behind some of the treatment decisions made for certain families, there will undoubtedly be concerns raised about the veracity of the diagnosis of EGID itself and with that comes inevitable questions about whether any of those diagnosed with EGID are genuinely living with it, or not. Comfortable viewing it may not be, but I will be watching it – and probably keeping my eye on the resulting social media frenzy too.

At the end of the day, I’m not really that bothered about what the label itself actually is for M – EGID, MCAS, food allergies or something else – as all I want is a better life for him and the others who find themselves in the same boat. As I said last year,

“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.”

*You can read a more in-depth, first-hand commentary about this GOSH story here