Category Archives: Chronic Illness

Big Youth Forum Meet-up

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In the middle of October, a group of over 80 young people from across the country gathered at Great Ormond Street Hospital for the first ever national Young People’s Forum (YPF) meet-up. Organised by members of GOSH’s YPF, the event looked to provide an opportunity for discussion about the practical and emotional issues that impact young people when they are in hospital as well as running workshops teaching a variety of skills from basic first aid to how to run a successful national awareness campaign.

Never ones to miss a great opportunity, we checked the proposed date for the meet-up and signed both G and M up to be a part of the day as soon as we could. G has been a member of the GOSH YPF for over a year, whilst M had been counting down the days to his 11th birthday so that he could similarly join the group. He finally attended his first meeting earlier this year and was thrilled to be able to be a part of this inaugural event, especially when he revealed that they were hoping to invite a celebrity to take part in the event too. It proved to a real learning experience for them both as they were invited to take part in the planning for the day itself via conference calls, a life skill that I never imagined them learning before their careers kicked off. We sat around the kitchen table, discussing conference call etiquette, the need to keep your phone on mute until you actually wanted to speak and the importance of listening carefully to what the others involved had to say.

After weeks of careful planning, the day finally arrived and we made our way across London to GOSH bright and early on the Saturday morning, following the signs that had been chalked on the surrounding pavements to help the visiting youngsters find their way. Mike and I were excited to learn that their celebrity guest was comedian Alex Brooker, star of “The Last Leg” and himself a former GOSH patient. G and M were less impressed, neither knowing who he was and whilst M was initially quite disappointed that his own top pick, magician Dynamo, was not going to be there, he very much enjoyed the opening talk that Alex gave to the group of young people attending the Big meet-up.

From what they told us afterwards, the day just flew past and they were keen participants in every activity, including covering their arms with a selection of temporary tattoos recently designed by GOSH Arts with the help of a few members of the YPF. G decided to attend the First Aid workshop, where she learned the basics of CPR as well as how to deal with anaphylaxis and administer epi-pens. She was particularly delighted to learn this latter skill as it was something that she and M had requested be a part of the First Aid training given. M, on the other hand, opted for a workshop ran by consultant paediatric surgeon, Ross Fisher teaching practical presentation skills, which he has subsequently put to great use at school. All in all, G and M had a fantastic day and are already looking forward to next’s year national meet-up, which is being hosted jointly by the Nottingham and Derby YPFs.

FFEOA 2017

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This week has been a busy week for me and, for the first time in very many months, my focus has all been on my blog and the allergy and freefrom community, rather than on my day-to-day job. Much to the disgust of both G and M, I abandoned them to my Mum for the week and headed off to London, on my own,  to the Foodmatters Live conference. My planning for these 3 days away was incredibly well-organised, though I suspect I actually have my Mum to thank for that, as I missed out on attending last year and so had apparently looked ahead 12 months and had put the dates on her calendar to make sure I could go. I had then promptly forgotten all about it until she pressed me to confirm whether the children would be staying with her for the week or not.

My main focus was the Awards ceremony on the first night for this year’s Free From Eating Out Awards (FFEOA 2017). Despite the chaos of our household right now as Mike and I are both trying to find a work-life balance that suits us all, I had been keen to be a part of the Judging team again this year and M and G were just as excited by the possibility of finding some new places to eat that would suit us all. Luckily for us, we were able to find a couple of restaurants that we felt could cater for M in particular and were delighted to put them through their paces and see just how well they could meet their allergy and freefrom promises.

The evening kicked off with a quick overview of the plans going forward for 2018, which included some new categories, a simplified entry process and the promise of a monthly newsletter. They also revealed the new interactive map, which shows all the bronze, silver and gold award winners for the last 3 years and links to the all-important judges’ comments, which can help any discerning freefrom diner decide whether to eat there or not. I think this will be a great addition to the FFEOA offering and certainly will be something I recommend to those I come into contact with in the allergy community.

Despite my best efforts on the night itself, my fingers weren’t quite nimble enough and I just couldn’t keep up with tweeting the impressive number of gold award winners that were announced in each category. For any I didn’t manage to congratulate then, my apologies, but from the sounds of it, each and every award was well-deserved. I must make special mention of the wonderful Cafe Nouveau in Frome that we judged last year, who succeeded in achieving another gold award this year and also the Bangkok Canteen in Gloucester, who also won gold this year. Mike, the children and I visited there as part of this year’s judging stint and a review will follow in due course. For a full list of this year’s winners, please visit the FFEOA website.

As ever the best bit of the evening came after the awards had been announced. I was able to spend some time chatting with a few of the lovely friends I’ve met through the allergy world over the past few years, including Natalie of Intolerant Gourmand, Ryan of Borough 22, Ruth of What Allergy? and the Free From Fairy herself, Vicki. All in all, a wonderful evening and a great start to 3 days of learning more about all aspects of the Freefrom and allergy world.

Unexpected Greek Treats

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We might have packed a suitcase full of a variety of allergy-friendly foods to keep us going during our 10 days in Greece, but, as ever, we kept our eyes open for any M- and G-friendly Greek treats that we could spot in the supermarkets. delicatessens and local shops in Athens and on Syros. I had no doubts that we could find the bare essentials of soya milk, goats’ cheese and rice, but it’s those unexpected finds that make all the difference when we’re travelling as a family.

The first fantastic find, and one that we found ourselves stocking up with to last the duration of our stay, was this unassuming pack of smoked chicken fillet that quickly became a firm favourite with M. Mike had ventured out of our Athens studio one afternoon and found a delightful small deli less than 5 minutes walk away. They had a huge selection of fresh and dried olives, oils, cheeses, breads and cooked meat, but it was the smoked chicken that caught his eye as we had been struggling to find an appetising way to cook and serve chicken for M, who is not the biggest fan of cold chicken at the best of times. The smokey flavour was something new to him and whilst he was prepared to let the rest of the family have a small taste to see just how delicious it was, he insisted that the remaining slices were his and his alone. Mike also discovered these brown rice cakes with pink Himalayan salt, a surefire hit with M and the perfect base for his smoked chicken fillet sandwiches that became a lunchtime staple.

As we had expected, we had no problem in sourcing goats milk, butter and cheese for G in Athens and were also delighted to find both almond and hazelnut milk there too. She quickly fell in love with the traditional Greek Feta cheese and ate it as frequently as M devoured the chicken fillet for lunch. We also found a small selection of gluten-free crisps that they both enjoyed on occasion as just a small snack when needed. However, it was on Syros that we were truly amazed by the unexpected plethora of allergy-friendly foods we found in the very small supermarket in the seaside village of Finikas. When we ventured inside on our first day on the island, we were hoping that we might be lucky to find some soya milk for G to drink and were completely blown away by this astonishing selection of dairy-free alternatives, from almond milk to chocolate soya milk, goats cheese, butter and yoghurt, and the one item we had never expected to find there: rice milk.

This tiny treasure trove also stocked a small, but comprehensive selection of gluten-free products including rice cakes for M, gluten-free pasta, bread and biscuits. We bought a couple of different flavours of the allergy-friendly biscuits that quickly became a favourite with G. These were a welcome treat and alternative to dessert for her especially when accompanied by some small slivers of Feta, whilst M enjoyed the opportunity to pick and devour fresh figs from the trees surrounding our villa at the Good Life. Having discovered these unexpected Greek treats, we made an effort to buy a few extra packs of biscuits and rice-cakes alike to bring back home with us to keep the memory of our Greek adventures alive for just a little longer.

Eating Out with Allergies in Greece

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It feels a little as if this is becoming a mini-series in itself: a list of the countries where we’ve successfully managed to find a safe way to eat out with food allergies with both children. In the last year, Mike and I have been impressed by the options we have found in both Italy and New York whilst travelling without the children and our summer in Portugal last year was a great success thanks to the freefrom choices we uncovered there. Our decision to venture to somewhere new this August meant we had to adopt our usual 3-prong approach to travelling with food allergies:

  1. Pack an extra suitcase with the bare minimum of everyday essentials that we will need to cater for both G and M in our self-catering accommodation;
  2. Relax the rules a little for M and allow him to enjoy the full Greek experience on occasion, whilst keeping him strictly to his restricted diet the rest of the time; and
  3. Be prepared by doing some research about restaurants in advance and be willing to explain at length numerous times just how restricted his diet is.

Our careful planning ahead meant that we were all able to eat 3 meals a day without too much stress and we achieved some great successes along the way. We had started a new approach to food trialling about 6 weeks before we travelled, whereby we chose 3 foods to challenge M with over a 3-month period and had strategically picked the ones we thought would be of most use whilst we were in Greece. This is the 3rd way of food-trialling we’ve tried over the last 12-18 months, all with the support of our local hospital, and whilst I still have my concerns about whether this really is the best approach to take, it did allow us more flexibility that we’ve had before. M decided he wanted to trial olives, prawns and bananas and these seemed a good fit with our Mediterranean break.

We found several highlights in Athens, including our perennial favourite, the Hard Rock Cafe, where we ventured on one of our more relaxed days to the topic of M’s restricted diet. He enjoyed every mouthful of his gluten-free burger and chips with great gusto and even though the increased dose of medicines we had agreed with his consultant before we went didn’t fully tamper down his body’s response, it was a real treat for us to see the delight on his face when faced with something a bit different to the varieties of chicken, rice and cucumber that he’s become accustomed to at home. The waiting staff worked hard to accommodate our additional requests around making sure the meals were also dairy-free and the vegetables added to the plate were restricted to just cucumber for both children as we had asked.

When you wander through the Plaka in Athens, you are surrounded by a huge array of small tavernas to choose from, ranging in price and, if I’m honest, authenticity. It was surprisingly easy to cater for M at nearly all of these and the ones we ended up eating at were delightfully keen to prove themselves to us. Every menu seemed to contain grilled chicken and rice and it was just a case of just how much of an accompaniment they were able to serve, with most preparing small salads of cucumber, apple and pear. G tended to play it safe and opted for the easy option of steak and chips – or sometimes steak and rice – though we did manage to convince her to try mouthfuls of our more authentic Greek dinners, which she reluctantly had to admit to enjoying despite herself and her preconceived ideas! One evening we even found a restaurant serving gluten-free pasta and G enjoyed a delicious spaghetti bolognaise, albeit in the wrong part of Europe.

We didn’t really eat out too much on Syros as we instead took advantage of the beautiful local produce that Nick had kindly sourced for our pantry at the Good Life and spent time preparing, cooking and enjoying simple meals at our villa. However, we did choose to eat some lunches at the beachside restaurants and this is where having olives and prawns as a menu option really came into its own as M indulged in some delicious meals including those tasty morsels, whilst munching on the Greek rice-cakes we had managed to buy in both Athens and Syros.

Magical, mythical Athens

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One of the most wonderful things about our Greek holiday was to experience the absolute delight of both G and M as we trekked our way around Athens, visiting those ancient sites that they both associate with the fantastic Greek myths that they love to read. It’s difficult to pinpoint exactly when we introduced the children to the Greek myths, but they both love to listen to the audio-book of “Atticus the Storyteller” and M has been known to spend hours at bedtime absorbed in re-reading his favourite tales. There are just so many places to go and sights to see in Athens that we had to carefully pick out those we wanted to visit during our limited time in the city.

You just can’t visit Athens and even consider not wending your way to the top of the Acropolis to see the Parthenon and other monuments. Climbing up in 34°+ heat is not easy, but the views from the top were definitely worth the effort, and all the water we drank. Mike’s must-see destination was the Acropolis museum and whilst neither children was initially that keen to go, the lure of the air-conditioned inside, the wide array of artefacts on display and the brimming bookshelves they discovered in the shop soon overcame their reluctance. Our hostel for the duration was less than 5 minutes walk away from the museum, which made it the ideal place to head back to for a much-needed late lunch and a little downtime after our busy morning.

As well as his yearning to find a city playground to spend time in, M chose to take us to the Temple of Olympian Zeus. We visited these incredible remains in the early evening and were fortunate that there were very few other visitors to the site whilst we were there. The remaining columns were simply awe-inspiring and we were fascinated to spot the individual pieces that were so carefully used to construct each column. The ancient engineering skills that created this spectacular monument left the children speechless as we contemplated just how the Greeks managed to build it in a time before modern machinery existed.

Poor G had to wait to the end of our holiday to get to her location of choice, but it was definitely worth the wait. She would have loved to go to see the Temple of Poseidon, but the 2 hour journey there was just too much for us to squeeze into our already time-pressured holiday schedule. Instead, G decided she wanted to see the Temple of Hephaestus and it proved to be a great choice for our last day in Greece. It is found in the ancient Agora, which has so many wonderful ruins to explore as well as the impressive temple itself. The Temple of Hephaestus is the most complete temple in Athens and gives just a small insight into what it must have been like to live in the city over 2 thousand years ago.

By the time our first 3 days in Athens drew to an end, we were all ready to embark on the next part of our Greek adventures, which began with yet another early morning start, a cross-city taxi journey to the port and a passenger ferry trip to the beautiful Greek island that would be home for the next few days. 

The holiday starts here

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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

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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

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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.

Charity Cut

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Whenever I write my blog, I am always conscious of not wanting to focus on any one emotion more than another, particularly when life seems pretty bleak to us. Yes, sometimes things feel overwhelming, but I know that in the grand scale of things life could be so much worse and I’m truly grateful that it isn’t. However, this is one occasion when I’m not going to apologise for shouting from the rooftops about just how fantastic both my children are in my eyes. They’ve both had brilliant end of year school reports and Stagecoach reports, which is a real testament to how hard they’ve worked this year, but this post is about something so much more than that and something of which Mike and I are incredibly proud.

In May, as part of National Eosinophil Awareness Week, M wrote to his Headteacher to ask if he could hold a “Dress as your Hero” day at school. Unbeknownst to me, M was invited to speak at one of the whole school assemblies about why he was running this fundraiser and took this opportunity completely in his stride. Both his class teacher and the Head have told me that he spoke confidently and with great articulation, able to clearly explain who Over The Wall are, what they do and the importance of these camps to him and to G. The school responded in amazing fashion and M’s hopes of raising around £100 proved to be a woeful underestimate of the final total.

Back at the start of the year, I wrote about our family’s New Year Resolutions  and mentioned that G had set herself a resolution that would be revealed in the fullness of time. It’s a real privilege to now share that resolution with you all. My gorgeous girlie decided that she wanted to cut her beautiful long hair before we travel abroad this summer and was keen to do it for charity if at all possible. So, for the past 7 months as G has been growing her hair as long as she could get it, she has been researching just how she could support a charity by doing so.

Two weeks ago, G faced her charity cut and had over 10 inches cut off to benefit 2 amazing charities. The 10-inch plait has been sent to the Little Princess Trust, who will use it to make real hair wigs for children across the UK who have lost their hair due to intensive medical treatments. Not content to leave it at that, G decided to join M in his fundraising efforts for OTW and asked family and friends for any sponsorship they were willing to give her to support her in her efforts. Regardless of any lingering nerves or uncertainties, G was excited to see her final look and I’ll be honest enough to say that we now have a teenage daughter that looks stunning and even more grown up than she did before. She really is rocking her new style:

Working together with this shared purpose, G and M have succeeded in raising more than a phenomenal £760  for Over The Wall, the charity that provides free camps for children with serious health challenges, their siblings and their families. As you’ll have read more than once on here, G and M have both benefited hugely from attending the Over The Wall camps and as a family we have chosen to support the work of this charity in every way we can. This really is a proud Mummy moment for me, seeing G and M be determined to raise awareness and financial support so that OTW can keep creating the magic they do every day at camp.

We are, of course, more than happy to keep collecting for this fantastic cause and you can add to the hard work of both children over the last couple of months by donating via our Virgin Giving website here. Thank you

Perfect Faces for Radio

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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.