Tag Archives: food allergies

Γεια σαυ Αθήνα

It could appear that I’ve been keeping our final summer holiday destination close to my chest, but hopefully the title of this post will have given you some idea of where we headed to get a healthy dose of natural vitamin D and a much-needed complete break from it all. We decided to head somewhere that the children had never been and a country that Mike and I had last visited close to 17 years ago: Greece.

For those of you not yet fluent in the Greek alphabet and language, the above words say “Hello Athens” and that was how we chose to top and tail our trip to this beautiful Mediterranean country, with a few days spent soaking up the history in the capital city. Our early flight from Gatwick meant that we had reached our hotel by mid-morning and were soon ready to get started on our explorations. We stayed at the centrally located Athens Backpackers hostel, which was only a few minutes walk from both the Acropolis and the Plaka. The double set of bunk beds in the bedroom might not be every family’s idea of a great start to a holiday, but we wanted something that gave us easy access to all we were hoping to see in Athens and were delighted with our choice. With a spacious living area, small, but well equipped kitchen and the all-important air-conditioning, this family studio apartment was everything we could have wanted to start off our holiday.

Following in the tried and tested footsteps of previous holidays, our first destination was to buy tickets for the Athens City Sightseeing bus tour and having stopped to grab a quick lunch, with mediocre success meeting the allergy needs of G and M, we set off around this ancient city to pinpoint exactly where we wanted to visit over the next couple of days. One of the highlights of our city stay was, without a doubt, the Panathenaic Stadium, site of a simple racetrack for the original Panathenaic games and latterly home of the first modern Olympics in 1896. It somehow felt fitting to visit this Olympic stadium following so shortly after our trip to the Queen Elizabeth Olympic Park in London for the 2017 IAAF World Championships and M in particular was keen to soak up the history by listening to their comprehensive audio tour. One of the hidden gems there for me was the small museum that housed a number of posters, artefacts and torches from several Olympic Games over the last 120 years. G and I took our time walking around this single room housing numerous treasures and delighted in spotting the posters and torches from all 3 London Olympics Games: 1908, 1948 and 2012.

The children also enjoyed our stop at the Monument of the Unknown Soldier in Syntagma Square, where we watched the changing of the Hellenic parliament guard, who are known as the Evzones. This ceremony is impressive to watch, not only for the incredible historic costume, but also the slow, careful and measured movements that the soldiers make as they take up their official posts for the next 60 minutes.

Travelling to Greece in August had its advantages. Not only did we enjoy constant sunshine and temperatures that could sometimes be stifling in the city, but most Athenians have also gone on holiday and so the queues and crowds were not as big as they might otherwise have been. The one downside was that our holiday coincided with the Feast of the Assumption on August 15 and we were warned that many shops would be closed on the day. However, we planned our day carefully by having a good supply of food in our apartment for lunch and fulfilled M’s desire to visit a local playground, which we found quietly hidden in the beautiful National Gardens located just behind the Parliament buildings.

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The holiday starts here

Our trip to London to see the World Athletics had been planned with careful precision to fit in with our much-longed for summer holiday. Whilst we usually try to fly from our local airport, which is a mere 10 minute drive door-to-door for us, we took advantage of being in the London area and instead arranged flights from Gatwick for early on the Sunday morning. I scoured the internet looking for a nearby hotel and parking package, which would allow us to get a few hours sleep before we travelled and included parking for the duration of our holiday. Much to my delight, I managed to find a fantastic deal giving us a night’s stay at the Holiday Inn Worth and valet parking at Gatwick’s North terminal – ideal when your Sunday morning flight requires you to be at the airport for around 2.45am!

It took us a little longer than hoped to journey across London from Stratford and out to Worth, so by the time we arrived, all we really wanted to do was move a couple of key belongings from one case to another, pack our hand luggage for the flight and have dinner before heading to bed for as much sleep as we could manage ahead of our middle-of-the-night wake-up call. Whilst I sorted the cases and G and M emptied, sorted and repacked their backpacks, Mike was tasked with the job of investigating the hotel restaurant to see if we could just stay put and successfully feed both children there, or if a quick internet search was required to find somewhere safe to eat in relatively close proximity. Thankfully the hotel restaurant, Lytton’s Bar and Brasserie, assured us they could cater for both children, despite the seeming lack of allergy-friendly options noted on their menu and so we settled down for an early dinner.

G opted for her perennial favourite of a medium steak with salad and chips, which we had confirmed would be okay for her, whilst the chef worked his magic to prepare grilled chicken with pilau rice and a side of cucumber for M. For those slightly more eagle-eyed amongst you, you might notice that there were some peas mixed into M’s rice, something that is definitely not yet on his safe foods list. We had agreed with our local gastro consultant that we would relax M’s restricted diet a little when away and whilst we might not have necessarily chosen to kick that trend off before we even left the UK, sometimes you just have to go with the flow and live life to the fullest. By the time we got to the end of the meal, both plates were more or less cleared and we were delighted to have once again found a great option for an allergy-friendly meal without too much hassle.

Mike quickly fell asleep, but the children and I decided to lie in bed watching the relay finals and celebrated quietly the huge success of the British squad, whilst commiserating over the unexpected injury of Bolt, who we had seen perform to his usual phenomenal standard that very morning. Excitement over, we drifted off to what little sleep there was left to grab before my alarm went off 1.35am and our holiday really started. We made it to Gatwick in good time and got ourselves checked in without too many problems around the extra suitcase of food and medicine that we had once again arranged to carry free of charge with Easyjet. Both G and M managed extremely well given our early start and we were soon to be found sitting in the airport Starbucks, enjoying our drinks of choice and playing a few rounds of the newly acquired Marvel Avengers Top Trumps and other travel games. Our holiday adventures were about to begin!

Brave New World

If you’re on any social media platform, be it Facebook, Instagram or Twitter, the chances are that your timeline will have been flooded this week with the ever popular first day photos like this one, on what an old friend humourously terms “National Stand in Front of your Door Day”. The start of every new school year always brings a list of tasks that need to be completed, which includes for us more than just name-labelling the new school uniform and buying huge amounts of school stationery that will potentially have disappeared by the end of the first week, but also making sure that we’ve dotted the “i”s and crossed every single “t” relating to the health needs of both children.

This year felt like even more of a challenge as M moves up into the same secondary school as his big sister and we find ourselves dealing with the reality of different teachers for every subject, a year group that’s bigger than the whole of his junior school and the need to educate the school in the world of M. The good news is that having reached the end of the first week, things have not gone horribly wrong and on the whole, it has all been a huge success. Every evening, M and I have looked through his timetable for the next day to discuss what he might need to do to make sure all his needs are being met as they need to be. I was as delighted as he was to discover that his educational needs have been noted on the tutor group register and so his teachers are aware that he needs extra support in relation to his Dyslexia and Dyspraxia. We still need to iron out the finer details of note-taking in class and how he prepares his homework for each lesson, but our unexpected find of yellow-tinted sunglasses whilst on our summer holiday have been an added bonus to helping him read the worksheets he’s given.

Disappointingly, though not altogether surprisingly, the level of awareness about his EGID and food restrictions has not been what we hoped it might be, but whilst my hopes were high, my expectations were truthfully quite low and we knew there would be work to be done in this area. He went to the Student Services with his medicines on the first day and by day 2 was confident enough to ask for a set of yellow cards, which gives him permission to leave class early to take them, jump to the front of the queue with 2 friends when it comes to lunchtime and go to the toilet whenever he needs to without having to wait and ask permission. Our biggest challenge was the one we feared it might be, that of the Food and Textiles classes that he will be taking this year. His cookery teacher was not aware of his dietary restrictions or just how important avoiding the cross-contamination risk is for M and so I’m waiting to talk to her after school on Friday to discuss just how we go forward with the lessons**. We are all keen for him to take these lessons and learn to cook, but Mike and I are very aware of the need to protect his fragile mental health and so will be working hard to make sure the cookery lessons don’t become a challenge too far for him.

As for G, my big girlie quietly and confidently started in Year 9 and is looking forward to the year ahead. She’s a little anxious already about making her GCSE choices later this year, but we have been spending time reassuring her that she won’t have to make those decisions on her own and that we will help and support her every step of the way, as will the school and her teachers. This year is a little different for G as they are now splitting a number of her classes into sets and her hard work over the last couple of years has stood her in good stead as she has been placed in the top 2 sets for almost all subjects.

It really is a step into a brave new world for the whole family and I can’t wait to see what the year ahead will bring for us all.

** So that conversation has happened today and I’m delighted to say was a really positive one. Mrs J has agreed that M can use ingredients and adapted recipes that are safe for him wherever possible and will work at his own station to help reduce the cross-contamination risks for him. She is as keen as we are to make the lessons a positive experience for him and will be regularly touching base with me to make sure we’re all getting it right.

Shocking Customer Service

At first glance, these look like great plates of food. These reflect a restaurant that has obviously understood our allergy requirements and nailed it. Right?

Actually, these represent a lunch that almost didn’t happen. An experience that certainly left a bitter taste in my mouth and almost resulted in an outright refusal to stay anywhere that could treat an allergy family so badly. I’m a keen proponent of giving praise where it’s due, especially in the world of free from eating out, but rarely will I actively name and shame those who get it so absolutely wrong. However, I am so incensed by our bad experience that I just couldn’t stay quiet this time.

We recently found ourselves in the Somerset town of Street, home to the Clarks village outlet stores and decided to head in to see if we could pick up any last minute bargains ahead of our summer holiday. Having arrived and parked our car, both children started mumbling about a need for food and we decided to start our shopping trip on a good note and have lunch. Whilst the map indicated that G’s favourite, Pizza Express, could be found on the far side of the shops, we thought we’d give a brand new eating out experience a try and opted for Frankie and Benny’s instead.

It has been a long, long time since we last ate there and, to be perfectly honest, it will be an even longer time before I choose to step foot in one of their restaurants ever again. We asked for their allergy menu, made some key choices and then waited for our waitress to arrive to start the ordering process. G was keen to have their GF pepperoni pizza and eager to exert her new-found confidence by ordering her own complicated requirements. And that’s where the problems began.

G asked to have their GF American Hot, without chillis and replacing the mozzarella with goats cheese, something we do the world over and something that has never been a problem. The waitress said that wasn’t possible and, when we explained that we needed the pizza to be both gluten- and dairy-free, she shrugged her shoulders saying that the pizza wouldn’t be dairy-free if we replaced the normal cheese with goats cheese instead. I patiently explained that G has a problem with the cows’ milk protein and can in fact tolerate goats cheese ok. The waitress walked off to “check the label” in the kitchen, before marching back to triumphantly announce that the label said it contained milk, so we couldn’t make that change.

I’ll be honest, I was slightly frustrated by now and so asked if it was possible to either see the goats cheese they use or perhaps instead, talk to the manager. I was polite in both my tone and my words, but determined that dealing with the restaurant manager would be a safer option for us and so our waitress’ response stunned me. She told me that the manager had told her it wasn’t a safe alternative and when I asked again if we could talk directly to the manager as M’s needs were considerably more complicated, she threw her hands in the air and rather rudely informed me that she was refusing to serve us because of my attitude.

In another time and place, I would have insisted on leaving right then, but I had 2 hungry children to feed and I didn’t want to start the ordering process all over again. Mike took over talking to the manager and the resulting plates of food were the success we needed them to be. We received an apology for our waitress’ attitude and reassurance that they would be very careful in preparing G and M’s lunches. They arranged a special drink for M – lemonade with vanilla- and worked hard to ensure the rest of our experience went without a hitch. I can accept that perhaps our waitress was having a bad week, my work week hadn’t been the easiest either, but for someone working in the service industry to be so dismissive and rude to a customer with additional requirements is completely unacceptable in my book. It’s a shame because both children really enjoyed their meals when they arrived, but if I never go back to Frankie and Benny’s with them, it’ll be too soon.

Perfect Faces for Radio

Looking back this evening at some of the photos taking up the precious memory that’s left on my phone, I’ve realised that there have been so many things that I haven’t quite got round to sharing with my blog. As you’ll have noticed, my foray back into the world of full-time work after being made redundant almost a year ago has meant that I just don’t have the time to dedicate to writing 2 or more blog posts a week, but I still want to share many of our recent experiences and so the updates may take just a little longer to arrive on your screens than before.

The first looks back to May, when every year we mark National Eosinophil Awareness Week and for the last 4 years, a big part of my campaign to raise awareness has involved live appearances on our local BBC radio station, talking all things EGID and answering questions surrounding the inevitable interest about M’s extremely restricted diet. Whilst it is always a challenge to think on my feet and answer questions without any prior warning about what the presenter might ask, I relish the opportunity to spend 20 minutes speaking about EGID and what it means to our family to live with it day in, day out to those listening within our regional broadcast area. I have spent 5 years being extremely grateful to those within the EGID community who have been honest about their experiences and take the time to support those who are newly diagnosed and often looking for an understanding that the medical community jut can’t offer. Sharing our story, both through my blog on a regular basis and through these occasional newspaper articles and radio appearances, are my way of giving something back to our EGID family, new members and old.

This year I wanted to change the dynamics of that radio interview if I could and so asked if I could bring G and M along to our local BBC studio to talk about what living with EGID means to them. The radio presenter and his team were more than happy to agree and so it was that on one rather glorious Monday morning, I found myself heading into town with an excited M and somewhat apprehensive G in tow. They had slight nerves that they didn’t know in advance what questions might be asked, but M had sought advice from his Stagecoach drama teacher the previous week and was confident that he knew how to develop his responses to any closed answer questions to avoid giving one word answers. I’ll be honest, I did have some concerns about both children speaking live on local radio: I wasn’t convinced that G would break from her current monosyllabic, teen state and had absolutely no idea what might come out of M’s mouth at any moment. In both cases, I would be hard pushed to exert any sort of control over them once we were on air, except by thoroughly preparing them on our car journey there and then reminding them of my expectations through meaningful glances and subtle eyebrow raises across the microphones!

To my delight, both children were absolute stars and whilst, unsurprisingly, M took to the experience like a duck to water, even G found her confidence to answer some of the questions and we had only one awkward silence to contend with during the 20+ minutes of our appearance. The children spoke clearly and slowly to make sure they could be understood and took their time to give well-thought out answers without leaving the listeners waiting for the dead air to be filled. They both loved every moment of it and have expressed an interest in finding out more about possible future careers that would see them working for the BBC, though G was fascinated by the research being done for the different news programmes and M has a yearning to explore the life of a TV camera man. My big thanks go to our local radio station who were prepared to take a chance on interviewing G and M live on air and for giving us, yet again, the opportunity to spread the word about EGID far and wide.

Supporting our favourite Foodpreneur

Every now and then you stumble across something wonderful that makes an unbelievable difference to your life or that of those around you. Since I uncovered this brand at the Free From Food Awards 2016, I’ve not hesitated to sing the praises of this particular allergy superhero from the proverbial rooftop and finding myself in the position to do this once again, I’ve not hesitated in lending my voice in support. The best thing about this particular discovery is that M’s superhero has become a firm family friend in the 18 months since our first conversation and for all the right reasons. Not only did he lovingly create sweet treats that went beyond the wildest dreams of M and G and were deliciously safe for them both, he has also sent messages of love and support, not just when M broke his leg last year, but as he prepped for his SATS this year too.

Up until a month ago, I’d never even heard of the Virgin StartUp Foodpreneur 2017 competition, but I’m now eagerly waiting for the final results with fingers and toes tightly crossed for our favourite foodpreneur: the awesome Ryan, from Borough 22 doughnuts. The competition looks to recognise and celebrate UK-based food and drink startups, with the winner being offered mentoring from industry experts as well as a 6 weeks selling opportunity through joint sponsors, intu, who own shopping centres across the UK. From the hundreds of entries received, 15 were shortlisted for the first stage of the competition, where each startup were invited to give a 3-minute presentation about their business, why they started it and the direction they’re hoping to take it in the future. From a home-delivery wine service to vegetable- and fruit-infused water and vegetarian hot dogs to hand-crafted chocolates, there’s a lot of delicious options to choose from.

I was delighted to learn this week that Ryan has moved on to the next stage and is one of 8 semi-finalists, who will receive a week’s worth of pop-up shop space at one of nationwide intu’s shopping centres to introduce their wares to a new audience. Ryan has been given a kiosk at the Lakeside shopping centre in Essex and will be working 12-hour days, 10am to 10pm, from this Friday, June 30th to July 7th. If you’re in the area and able to stop by to see Ryan, taste his amazing doughnuts and show him some support, I know you won’t be disappointed with his fantastic freefrom ware.

And don’t forget to tell him that M sent you!

Pub dinners and Picnic lunches

Our 2 days in Stratford-upon-Avon meant that we had to find somewhere safe to feed both G and M for all our meals and we took the opportunity to try out some new options that we hadn’t had time to explore before. As far as breakfast is concerned, these days we tend to go for the easy option, which involves taking M-friendly cereal, a couple of litres of rice milk and a pot full of raisins for a cosy breakfast in our room. The tempting array of breakfast treats, from bacon and eggs to toast and jam, is just too much for M to cope with first thing in the morning and we know that having to deal with that temptation will cause an anxiety that will last the rest of the day. Daytime snacks are also easily covered as we take a supply of rice cakes, home-baked goodies and fresh fruit for M and a selection from perennial favourite Nakd date bars, sesame snaps, fruit snacks and gluten- and dairy-free treats for G.

However, when it comes to lunch and dinner, especially if we haven’t timed our trip perfectly to allow for a packed lunch or tea to cover one of our meals, we are left to search through the shelves of local supermarkets or scour the menus of available restaurants with our fingers crossed that we’ll find something that will suit us all and keep the children full and happy. Our first night’s dinner was a resounding success and we were left wondering whether the rest of our meals would be so adequately met.

At last year’s Free From Eating Out Awards, pub chain Wetherspoons won a Silver award in the Pub restaurants category, with their impressive gluten-free, dairy-free and vegetarian/vegan offerings. I’ll be honest, Wetherspoons is not somewhere we would usually choose to eat when there are so many other world cuisines to taste, but The Golden Bee in Stratford looked welcoming and promised to be another success story when it comes to feeding M. I will confess to breaking from our norm as we checked with the restaurant beforehand to see if they could cook an M-friendly meal and then made a reservation to make sure there would be a table waiting for us and our peculiar dietary needs. As is so often the case, there was no rice option available for M, but 2 grilled chicken breasts, plenty of cucumber and 2 packets of pre-cut apple slices proved to be all our hungry boy needed for his dinner. G struggled a little to decide on what she wanted to eat, not least because she had to cross-reference between the extensive gluten- and dairy-free menus, but she finally settled on gammon and egg, which is a definite favourite of hers. I was impressed by the range of foods available and whilst they weren’t able to provide safe alternatives for dessert, the plates themselves were more than enough to feed and satisfy my hungry duo.

Our next challenge came with our picnic lunch the next day, but I thought I had another potential ace up my sleeve and was delighted to discover that I couldn’t have been more right. Thanks to friends from the wonderfully active on-line allergy community, I had heard more than once about the improved selection of freefrom foods available at Marks and Spencer and it was great to finally have a chance to test it out. The selection of “Made Without” sandwiches and wraps available for G was impressive and, in the Stratford store, incredibly easy to find, though a trip to our local M&S this week has proved a lot more challenging as they hide their allergy offerings in plain sight amongst all of the other sandwiches for sale. It didn’t take G long to zoom in on her sandwich of choice and the gluten-free prawn mayonnaise sandwich was definitely massively enjoyed. She also chose some plain crisps and was keen to try the gluten-free scotch eggs that we had spotted in the chiller cabinet. She later confessed that she hadn’t enjoyed them as much as she hoped she would because of the flavour of the sausage meat, but it was just so nice to be able to buy her some picnic foods that were just like those others would eat. We managed to find some safe cooked chicken slices for M and accompanied by rice cakes, pink lady apples and pears, we had a great picnic to keep the whole family happy.

All in all our weekend stay in Stratford-upon-Avon was a great success and both children want to visit again soon and perhaps see a Shakespeare play in the theatre.

Wonderful dinner, shame about the price

After a busier-than-originally-expected National Eosinophil Awareness Week, I took a much-needed sabbatical from my blog and concentrated my efforts on getting my day job and home life back in order to varying levels of success depending on which particular task you’ve decided to look at. With May half-term now behind us, it seemed an opportune moment to get back to the writing and catch up a little with our adventures over the last few weeks. Whilst there are lots of things to tell you about, I decided to start with one of my favourite things to share – the success story of a fantastic meal out.

Our household has been filled for months with the unbelievable stress of M’s SATS and by the time half-term hit, that particular challenge had been well and truly put behind us. Thanks to the unfailing support of M’s class teacher and school, we all came through the experience relatively unscathed and Mike and I wanted to do something to mark the end of that pressure and instead look forward to the rest of M’s final term in Junior school. The first weekend of half-term was the May bank holiday and we decided to surprise the children with a trip to Stratford-upon-Avon to discover more about this beautiful Warwickshire town and its most famous forefather, William Shakespeare. We had lots planned for our 2 days there and the glorious May sunshine on the Sunday made for a fantastic day. However, as always, our skills in finding somewhere safe for the whole family to eat were stretched to the limits, though our final destination on the Saturday evening proved to be a great choice.

For those of you who have never been to Stratford-upon-Avon, it is not filled with a plethora of the chain restaurants we have somewhat come to rely on as a “safe bet” when we need to feed M somewhere new and sadly the few small independent eateries we explored were unable to prepare anything that he could eat. Finally, I spotted a Zizzi restaurant and whilst we haven’t eaten there for a long time, I had in the back of my mind a vague memory of a discussion within our EGID support group, where others had had great success with eating there. We headed inside and started questioning the manager about whether there was any chance of an M-friendly dinner or not. To our delight, he reassured us that they could manage a plain grilled chicken breast with cucumber and were happy for M to eat his own rice cakes at the table.

As G, Mike and I perused the menus to make our own dinner choices, I had a sudden flash of inspiration about something I was sure I had read and, upon checking once again with our extremely accommodating manager, was delighted to be able to tell M that he could also have some mozzarisella cheese added to the dish to add a little something extra that he hasn’t been able to have when eating out before. M couldn’t wait for his dinner to arrive and G was similarly excited about her pepperoni pizza. The plates looked fantastic when they finally reached our table and both children soon made quick work of clearing the dishes without any argument. Mike and I also enjoyed our meals and we would have been more than happy to call it a night there, but it turned out that the best bit was yet to come.

Whilst G had been studying the extensive allergy menu, she had identified a couple of gluten- and dairy-free puddings that she could have and my eagle eyes had already spotted the rare possibility of lemon sorbet as a dessert for M. Our waitress was happy to grab the lemon sorbet label for me to check and as soon as I gave the go-ahead, a double scoop of sorbet and a fantastic-looking Sticky Chocolate and Praline Torte with coconut and chocolate ice-cream arrived at our table for G and M. For the last couple of years or so, there has been a campaign called #fruitisnotapudding, which seeks to encourage allergy-friendly options for dessert, rather than the somewhat ubiquitous fresh fruit salad. Over the last few months, this campaign has really flourished on social media and it’s been great to see what restaurants can do when they really think about it. As a family we rarely eat pudding whilst we’re out because there is only very occasionally some tempting and tasty options that are both gluten- and dairy-free for G, without even beginning to think about preparing a safe alternative for M. Our discovery of this delicious Torte and ice-cream  for G was, for her, a dream come true and only goes to show that it absolutely can be done with some effort.

It won’t surprise you to learn that the dessert dishes were emptied just as quickly as their main course plates had been and we had 2 very happy children by the end of the meal. We thought nothing could spoil a great evening meal out for us all…until the bill arrived at our table. There is no rhyme or reason to how any restaurant charges us for the meal that they prepare for M; sometimes we have a double portion for the price of one, sometimes they just bill us for an extra or a side dish and very occasionally we have been fortunate to be gifted M’s meal for free. As is so often the case, M asked for a double portion of chicken and the plate of 2 grilled chicken breasts topped with some melted mozzarisella cheese and a healthy serving of cucumber was added to the bill at an eye-watering £27.90! Unfortunately, Zizzi’s approach to billing left us with a slightly bitter aftertaste and even though the duty manager did eventually concede to just charge us half of the original cost, we will have to think very carefully about when and if we choose to visit them again. It was a fantastic meal out for us all, but we ended up paying a lot for less than a handful of ingredients.

M’s marks:             10/10                                                                                                                               G’s  marks:             9.5/10                                                                                                                               Parents’ marks:    9/10 for food, but a disappointing 2/10 for approach to billing

NEAW 2017 – The journey continues

NEAW 2017 is drawing to a close, but for those of us living with EGID the journey doesn’t stop here. Everyday will continue to involve taking a number of medicines, examining food labels, careful food preparation, monitoring symptoms and hoping that the next day will be even better. Small hiccups might become major hurdles to leap, or may pass by almost unnoticed as we breathe a sigh of relief that they didn’t become something more. Parents will continue to find last-minute solutions to unexpected activities at school, plan trips out with military precision and pull together paperwork, photos and lists of symptoms to take to the next hospital appointment. We will comfort our children whatever their battle, be their most ardent cheerleaders and be prepared to tackle anything and everything to get them the very best healthcare and support. Despite the increasing uncertainty about the EGID diagnosis, we will continue to raise awareness and, more importantly, we will never stop believing in our children.

This is the short film G and M made 2 years ago to explain EGID to their classmates. Whilst M does not have his feeding tube any more, the message is as clear now as it was then and I wanted to share it again:

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.

NEAW 2017 – No man is an island

Sometimes, when you’re stuck in the midst of the relentless demands and emotional turmoil of a chronic illness, it’s difficult to see beyond your immediate reality and nearly impossible to believe that anyone else can even begin to understand how you’re feeling at that moment in time. It is no surprise that the one with the diagnosis often becomes self-centred and self-absorbed as their illness dictates every facet of their life and it can take a long time to really grasp that there are others out there who can empathise because of their own struggles and experiences. It’s all too easy for the focus of family, friends and the outside world to be focused fully on the individual and often the others affected by the diagnosis are left to struggle on their own by the wayside.

Over the years we have worked hard to try to give G the attention she deserves and it’s heartbreaking to realise that there are more times than I care to admit where we have absolutely failed to get that balance right. M’s ill-timed admissions over G’s birthday for 2 years in row were a bitter pill to swallow for us all and nothing could really make up for the disappointment of spending her 12th birthday too many miles apart. Encouraging G’s involvement with our local Young Carers group and the GOSH YPF as well as applying for her to be a part of the Over The Wall siblings camps have all been important steps in recognising the impact that M’s health challenges have had on her over the last 13 years and supporting her to find her own identity that is completely independent from him. It is an ongoing process for us and Mike and I will continue to strive everyday to support G as much as she needs, especially as the emotional roller-coaster of her teen years starts.

Just as our family is affected by M’s EGID diagnosis, so too is the community that surrounds him. I have mentioned so many times the amazing village school that both G and M have attended and everyday am grateful for their unfaltering support. Since M arrived at their gates nearly 4 years ago, they have willingly taken on the responsibility of dealing with a child with complex additional needs, not just medical but educational too. They have allowed both children, and us, to promote NEAW and their continued support with our fundraising efforts has been fantastic. I regularly read about the problems other parents with EGID children are facing in their schools around the UK and I know that we’re incredibly lucky to found this little gem. M has been able to attend school with a feeding tube, a broken leg and an extremely restricted diet and his attendance is remarkable for a child who has been through so much in so short a time. His Year 6 teacher has been fantastic at encouraging him this year when the prospect of SATS has caused him unbelievable anxiety and she has put up with a plethora of emails as I’ve tried to iron out the biggest wrinkles in a stress-filled few months. His classmates have similarly been an irrefutable source of encouragement and his move up to secondary school in September will be eased by their presence in his life.

We do not live in splendid isolation and every action we take has a ripple effect that can stretch out further than we can ever imagine, especially as a child. We are extremely lucky to have a community that works with us to help both children have the childhood that they are entitled to enjoy, one that is all too often marred by the difficult reality of chronic illness. As G and M grow older, my hope is that the realisation slowly dawns that whilst everyone’s life is unique, there are moments that teach us all lessons that can help us reach out to and empathise with others. Going to Over The Wall camps has shown both children that, despite those times when they feel isolated, there are others in the bigger world that do understand what they’re feeling, what they’re living and who can perhaps help them learn to survive even the darkest of emotions; and that when they have survived their own dark place, they can reach out to others who need to be brought back into the sun.

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.