Tag Archives: Conditions and Diseases

Lost in Translation

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As Mum to a child with additional health needs, you have to be prepared the minute you venture outside your front door. You don’t just carry with you the medicines, equipment and food items you need to get you through the next few hours relatively unscathed, but also the necessary mental strength to explain your child’s needs to everyone you encounter and ensure that your trip outside of the safe bubble at home goes as smoothly as it possibly can. There are, of course, times when an essential gets left on the kitchen counter and you have to think on your feet and find a solution that will work until you get back home, and, for us, there have been times when, despite the clear explanations given and the seeming comprehension of the waiting staff, mistakes have been made and the children have suffered the consequences of those misunderstandings.

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When you add travelling abroad to the mix, those unavoidable stresses become even more intense and, as an allergy Mum, I can tell you that worries about safe food are right at the top of the list. As you may remember, last year we decided to stay in the UK during that first holiday season with a tube in place and had the most amazing week in Cornwall, where we discovered hidden treasures of restaurants and sight-seeing spots that we are still talking about nearly 12 months on. However, we decided that this year we would venture back to a favourite haunt and visit the Algarve in Portugal, with a few extra days in Lisbon tacked on to the start of our trip. We know the resort of Alvor extremely well, but this will be the first time of visiting with such a restricted diet and I have to confess that nerves have been a little greater as we plan our 10-day stay away from home.

One thing I learned early on in our holiday planning with M was to talk to our airline about taking an extra case filled with whatever medicines or foods we will need whilst we’re away and have had superb experiences with both Easyjet to Portugal and Virgin Atlantic to Florida. These conversations paved the way for our long-haul flight to the USA and we found that both the airport lounge and the airline were able to provide safe meals for M when we gave them a little advance warning, but what happens once we’ve landed abroad, especially in a country where we don’t speak a word of the native language? dictionaryOur back-up plan is our self-catering apartment, which means that there is always somewhere to prepare a simple meal of M’s safe foods without too much trouble, but I do, perhaps selfishly, want a holiday from that daily grind of cooking and be able to enjoy a family meal as we used to do when the children were small. Our previous holidays to Portugal were challenging, but not impossible as M loves fish and seafood which are always readily available, but I worried that the current restrictions might be a demand too far.

Fortunately, there are answers to the anxiety about communicating food allergy requirements in a foreign language and whilst it took a little more effort than originally planned, I got our perfect solution in the end. I started by calling Allergy UK, who offer a fantastic service of providing translation cards which “…feature an allergy alert message, an emergency message and a message for use in restaurants to ensure that your food order is free from the particular allergen that causes your reaction…” and can be ordered in any one of 36 languages to cover 70 different allergens. However, I really wanted a bespoke message detailing M’s current safe foods and unfortunately Allergy UK was not able to tailor their cards accordingly, but they did point me in the direction of the amazing Yellow Cross, a company I had never even heard about until recently.

IMG_0824[1]Thanks to a detailed e-mail conversation with Yellow Cross Director, Jane Harrison, she agreed that it would make far more sense to detail what M can eat, rather than a lengthy list of his many allergens and suggested she spoke to their translator to cost out these personalised cards. We settled on appropriate wording, it was passed to their Portuguese translator and I was quoted a very reasonable £20 for a set of 4 eating out translation cards. I confirmed that we wanted the cards, made payment and in less than a week, the finished credit card-sized cards dropped through our letter box. The cards are printed on card and then carefully laminated to extend their life, and I couldn’t be happier with the finished product. They clearly state the wording I had discussed and agreed with Jane and their service was absolutely faultless. I found Yellow Cross willing to help us with our request and I’m certain that the inclusion of these cards in our travel survival pack will ensure that our Portuguese holiday goes with a swing.

M’s happy ending

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M had been anxiously counting down, fretting that the day might never come, but finally it arrived with just over a week to go until the end of term and I had left him at school that morning absolutely buzzing with excitement about everything planned for the day. It had been marked as an important day ever since his last fracture clinic appointment 3 weeks before, which you may remember showed that the break was not mending as quickly as the orthopaedic consultants would have liked and left M sporting his rather snazzy sarmiento cast for a few more weeks. IMG_0506[1]During that unexpected extra time, M had really made the effort to use his leg even more and became scarily fast and adept at using his crutches in every situation. The last week saw even more development as he more or less abandoned his crutches at home and finally started putting his full weight on his left leg. All this to ensure that that cast would well and truly be removed that afternoon and be needed no more.

Our afternoon started with a DEXA scan at the rheumatology department of our local hospital to assess M’s bone density. The severity of both this break and his previous broken arm alongside the longer than anticipated recovery time had rung a few alarm bells for his gastro team and they wanted to check that his restricted diet and years of malabsorption issues hadn’t had a detrimental effect on his bones. Although the blood tests done during his December admission at GOSH had suggested his calcium levels were fine, this additional test would give us a clear picture of his bones and hopefully put our minds at rest. I had been warned that M would need to lie still for up to 45 minutes, something I doubted would be do-able without a lot of persuasion, by which, of course, I mean bribery, but he promised to try his hardest as he realised how important it was to get these results. Fortunately, the scan itself actually took less than 10 minutes to complete and whilst M did have to lie very still, he closed his eyes and tried to relax as the bed and scanner arm twisted and turned around him to take images from all the necessary angles.

DEXA scan over, we had just enough time to walk across to the outpatients department for his fracture clinic appointment. With our timing near on perfect, it was almost straight into the x-ray suite, where M chatted away with the radiographer as if he was an old friend and went through all the motions to get the perfect set of pictures of the fracture site. From there, it was straight into clinic and minutes later into the plaster room to have his sarmiento cast removed. Ear defenders were quickly put into place before the saw was started and M’s expressive face reflected his nerves and the mild discomfort as the plaster technician cut through the cast and the vibrations disturbed his sensitive leg. The front half was removed and trimmed as M wanted to bring it home as a memento of the last 6 weeks and I flat-out refused to bring home the back half, covered as it was with layers of dirt, sweat and oodles of dead skin.

IMG_0777[1]M and I sat waiting for the orthopaedic consultant to look at his x-rays before giving us his opinion, so I tentatively peeled back the tubigrip stocking that had been the only barrier between his leg and the plaster for the last 3 months. His left leg was a little skinnier than his right, though not as much as we had feared it might be, but was also incredibly hairy, something we hadn’t anticipated at all. A little research told us that when a cast is in place for an extended period, it causes constant irritation of the skin and so the hair grows to form a protective layer between the skin and the plaster cast. It was a completely unexpected insight into what M might look like when he eventually hits those dreaded teen years and puberty – and he really wasn’t impressed! In stark contrast to his skinny, white and very hairy leg, M’s foot was almost orange in colour and as scaly as his bearded dragon thanks to 13 weeks of no washing and hot weather. I snapped a quick photo to show it to M and the entire fracture clinic must have wondered what was going on as he and I dissolved into fits of giggles as we tried to decide the best way to remove layer after layer of the dead, scaly skin. For the first time ever, M couldn’t wait to get home and jump into the bath and he stayed in it for a long time that evening in an attempt to remove both dry skin and hair.

IMG_0783[1]We were sent home with a walking boot and crutches to help ease him back into the routine of walking and exercising without his leg in a cast and within 3 weeks both had been abandoned to one side. We’ve been back for our final fracture clinic, where M was discharged with a clean bill of health and permission from the consultant to participate in as many of the activities as he wants at next week’s activity camp. Unbelievably there is no physiotherapy available for M through the NHS, but we have an excellent private physio in a nearby town and M will have a couple of sessions there to get him well on the road to recovery. He is having to learn to pace himself, something my hyperactive 10 year-old is not very good at doing, but the aching leg that results from a couple of hours running around our garden with G is a harsh reminder that his leg won’t just bounce back to where it was at the start of the year. It will take a few months to recover the strength, muscle tone and mobility that M is used to, but some hard work and focus will get him there in the end.

Most importantly, M got the happy ending he’d been hoping for since that miserable day in April. He was able to spend his last week of Year 5 back in school without crutches and even had some time back outside in the playground with his peers. And nothing will beat the absolute joy I felt as I watched him disappear from the classroom surrounded by his supportive friends on the last day of term.

Breakfast Bonanza!

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As I mentioned the other week, we came home from the Allergy & FreeFrom Show with bags full of new allergy-friendly goodies for G and M to taste test and review, and they have already made a great start in trying them all out. I originally planned a single blog post to cover our favourites, but soon realised that there were just too many to cover in a single piece of writing and that I would need to split my categories up instead. What better way to do this than by looking at these products in terms of the meals where we’ll be using them, and where better to start than with breakfast?

Breakfast has long been the bane of our household, with M following steadily in my footsteps as a reluctant eater of a meal first thing in the morning. Whilst I can, and do, have a later start to my day by munching on something in the office, M needs to eat before he goes to school and all too frequently this is where we’ve hit stalemate. I’ve turned my hand to make breakfast muffins in the past, but even those had a limited shelf-life of success and it was quickly back to the drawing board once his diet became more restricted. Every day has been a battle, mostly one I’m more than happy to fight, but on other days, well, not so much and we compromise on a glass of rice milk if nothing else. However, these past 2 weeks have been like no other and M has been up, dressed and downstairs asking for breakfast before I’ve even had time to take a breath every day. Every. single. day. Vive la révolution!

IMG_0689[1]The reason for this change of heart? The discovery of Rice Flakes Porridge courtesy of the amazing Delicious Alchemy, not something new to the market, but most definitely new to us. I’ll be honest, it is a brand I’d heard about in passing more than once, but I hadn’t really spent much time investigating it as I believed it to be big on the gluten-free front and not much else. Oh, was I wrong. As you will discover from their website, Delicious Alchemy was launched in 2006 by Emma Killilea, a coeliac who was frustrated and disappointed by the gluten-free options out there and decided to do something about it. The company has gone from strength to strength in the past 10 years and now works with a number of mainstream supermarkets and stockists to get their products on shop shelves. G was drawn to their stand by the delicious gluten- and dairy-free brownies that were wafted under her nose and I soon got chatting to their finance chap, where we swiftly found common ground on both the accountancy and allergy-friendly fronts. Despite G’s sighs of utter joy about the brownies, I wasn’t drawn to buying the mix given I’m very much a “cooking from scratch” fan, but once I spotted the packets of porridge flakes nestled amongst the other goodies, I felt certain this might prove to be our first purchase of the show. Delighted to IMG_0695[1]discover that the porridge contains rice and absolutely nothing else, I quickly snaffled 3 bags with my fingers tightly crossed that M would actually enjoy it as much as he insisted he would. I needn’t have worried. The rice porridge has been a massive success and is so easy to make too. Just 3 minutes in the microwave with some rice milk and his breakfast of choice is ready. Not only has he insisted on having it every morning, but it has become a popular bedtime snack of as well. I’m more than a little excited that this might also open up some options for snacks for M as delicacies such as flapjacks, biscuits and muffins all readily spring to mind.

 

M’s marks: 11/10 (and as he’s eaten 1.5 bags in a week, I’m thinking it’s an unmistakable hit!)

IMG_0687[1]Another producer I was determined to visit with G was Nutri-brex (recently rebranded from Nutri-bix), the overall winner of this year’s FreeFrom Food Awards and one of my personal favourites. Ever since I first tasted this breakfast cereal during my stint as a FFFA16 judge, I wanted to get some for G to try, but it has proved disappointingly difficult to find it in the less-than-well-stocked aisles of my local supermarkets. By the time we finally made it to their stand, G had gone at least 10 minutes without gorging herself on one of the many allergy-friendly samples that were on offer and was more than ready to try some of this cereal, in an attempt to shut Mum up if nothing else. The company had launched a brand new product at the show and G decided she would taste that with the added extras of some soya vanilla yoghurt and grated chocolate on top. IMG_0691[1]She was instantly won over and 2 boxes of the Coconut and Crispy Rice cereal bars soon joined the 2 original boxes that formed part of our goodie bags. Since coming home, G has enjoyed the original bars with raisins for her breakfasts and I’m so glad that I was finally able to introduce her to this product. It is tantalisingly close to being safe for M, but sadly until we trial sorghum, not something that is high priority for him right now, he’ll just have to stick to the porridge.

G’s marks: 10/10

IMG_0692[1]The day also introduced a couple of new-to-us milks, which have been brought home to trial. M is already very keen on the Rude Health Brown Rice Drink, which he claims has a slightly sweeter and nutty flavour in comparison to his regular rice milk. Whilst I love finding new products for M, given the recent problems with his broken leg, I prefer being able to buy rice milk that is fortified with calcium, something that this one doesn’t appear to be. Add to that the price of this product, which at around £2 per litre makes it considerably more expensive than the Rice Dream I usually buy for him, this will be saved as a treat for special occasions rather than an everyday commodity.

M’s marks: 10/10

IMG_0693[1]As for this last product, well the jury is definitely still out in the 7Y2D household and I will be withholding my judgement on it for quite a while. If you follow Nathalie at The Intolerant Gourmand, you may well have read about her 4-week trial of a2 milk and the conclusions she drew about it. I’ll be honest, the information we were given at the Show and that I have read via their website has left me more than a little confused. I understand the principles behind the milk and the exclusion of the a1 protein, but am unclear as to whether this means it is or isn’t safe for those struggling with lactose intolerance. Their representatives on the stand were more than happy to help, but not all of them were fully to speed with the claims the milk makes and whether it would be ok for G to drink it or not, given she can’t do dairy, but can tolerate goats’ milk. It’s a difficult one for me to assess as I have no intention of trialling G on it under the circumstances, but fortunately I had another willing tester in Mike, who is also lactose intolerant and was happy to give a2 milk a try, especially as they gave us a free carton to take away with us! The milk is incredibly creamy, far more so that either Mike and I expected for semi-skimmed and it took a couple of days for Mike to reach any conclusions. Whilst his stomach was certainly aware that he was drinking cows’ milk, something he hasn’t drunk for years, he didn’t suffer any extreme reactions to it. I’m not sure I’d rush to buy it again and would recommend that any one thinking of trying it does a lot of research first.

Mike’s marks: 8/10 and he commented that as someone who hasn’t had cows’ milk for years, the flavour took some getting used to.

Allergy and FreeFrom Show 2016

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I am so glad that we made the decision to visit last weekend’s Allergy and Freefrom Show at Olympia London as we had the most amazing day and made some great finds. The show has always been one of those lovely experiences for the children, where they have been able to try so many of the foods and drinks on offer, although we have constantly had to remind them that they can’t assume that everything is safe, even though so many of the offerings are. IMG_0645[1]This year was no different and G ate her way around the show, delighted to try some old favourites as well as the new products that we hadn’t seen before. It was understandably a much harder show for M this time than ever before, but he pinpointed on the map which stalls he wanted to visit and was thrilled that we managed to find some great new food options for him too. I am also extremely glad that we chose to take the wheelchair with us as it proved to be useful, not just for helping M negotiate the crowds flocking round each stall, but also as a receptacle for the numerous bags of goodies we gained during the day.

The day was also a great chance to catch up with some old friends from the blogosphere and allergy community, though this year I didn’t manage to make the bloggers meet-up arranged for the Saturday morningIMG_0647[1]. It was fantastic to see G and M recognised and welcomed by so many of these lovely individuals and they happily chatted away almost as much as Mike and I did. We spent some time at the Allergy Adventures stand, where Hailey and her crew of cheerful helpers were once again providing entertainment for the children in the guise of paper crafts and story-telling time, although they couldn’t persuade G and M to make the paper lollipops planned. Instead my pair went off-piste and created an array of paper lizard heads (M) and chatterboxes (G) to fill their time, some of which I think were left behind and not just stuffed into pockets and down the sides of the wheelchair.

Between us, we came home with a huge selection of new products for both children to try and I can’t wait to share their reviews of these foods with you, especially those that are not just new to us, but to the market too. We spent the entire day at Olympia, getting in when the doors opened at 10am and leaving as the tannoy announced that the Show was closed at 5pm  and I could quite easily have spent another day IMG_0651[1]discovering all those hidden gems that were tucked away in remote corners of the space. We had taken some safe food for M with us for his lunch as we just didn’t know what would be available at the site and G enjoyed a gluten- and dairy-free pizza from Schar that was cooked to order. The Show now visits 3 UK locations during the year – London, Liverpool and Glasgow – and I would highly recommend a visit if you get a chance to go. It is a brilliant day out for anyone living with food allergies and offers the opportunity to discover so many safe alternatives that often don’t make it to the High Street.

All the Fun of the Fair

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There’s no doubt that the weeks since April have dragged past at snail’s pace for a certain young man and his broken leg. 10 weeks into having that leg encased in plaster, and all of M’s hopes were pinned on the sarmiento cast finally being removed and allowing what must now be a skinny, white limb see some summer sun and fresh air. Unfortunately, the last fracture clinic appointment did not go according to M’s plan and the x-rays showed that the bone regrowth had slowed down and was not at the level the orthopaedic consultants were expecting it to be after over 2 months in a cast. The news that he has to survive another 3 weeks of limited mobility was not well-received and, having seen him stoically accept the verdict before crumbling once we left the unit, it was a massively disappointed and heartbroken little boy Mike and I had to take back home. The next 30 hours or so saw him at a lower point than we’ve experienced for a long time and it was only thanks to his sense of commitment and phenomenal strength to keep fighting the fight that we managed to convince him to go to his school’s summer music concert that evening, where he disguised his emotions well and took part on his cello and in the choir with reasonable gusto.

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What we needed was something to cheer him up and fortunately that something was already pencilled in on our calendar for that very weekend. It might not have looked too promising during Stagecoach on the Friday night as M broke down in tears about not being able to dance with everyone else, but thanks to much encouragement and enthusiasm from his big sister as well as a determined spirit that won’t be kept down, by early Saturday morning, things were looking a lot brighter and it looked like we had weathered yet another health storm.

The reason? The song and dance routine that their Stagecoach school were going to be performing as part of our local carnival’s parade and a huge serving of 70s disco to boot. We had always planned for M to be part of the parade in his wheelchair, knowing that the mile and a half long route would be too much for a newly healed leg.

IMG_0502[1]The preceding weeks had been busy with costume preparations and plans to pimp his wheelchair for the event and his decision to ask for a 70s themed cast at the previous fracture clinic meant that we were all set for the parade. Mike and I had also been roped in to help out for the day and I had even managed a few tweaks to our own clothes to make sure we were part of the 70s disco theme. All of the children were fantastic as they sang and danced their way towards the town’s football club and entertained the crowds, who joined in with the familiar moves of “Night Fever” and “Tragedy”. I was particularly proud of G, whose hard work and dedication to her dance saw her selected to be one of the 2 dance captains and she led the group with a flair and sense of fun that I rarely see from her when she’s performing. She really stepped up to the mark and the smile on her face showed just how much she enjoyed it.

And M enjoyed himself too, despite his insistence he wouldn’t. He and I showed off our moves as we grooved our way down the High Street and he waved right and left as friends called out and cheered our group as we went past. Of course the disappointment of not being able to participate as fully as he would have liked was still there, but he was caught up in the excitement of the day and really did enjoy all the fun of the fair!

 

Home-cooked Chinese takeaway

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chineseOne of things that I know M has really missed since his diet became so restricted is the occasional Chinese takeaway shared with the rest of the family. For as long as I can remember our young foodie has loved eating Chinese food and insisted on mastering the chopsticks early on, so the loss of that treat really did hit him hard. Thanks to the amazing team at our local Wagamama, M has been able to enjoy safe Asian food once again and recently I took the plunge and tried my hand at making him a Chinese-inspired meal too. It was never going to be the same as those fabulous meals we enjoyed in London’s Chinatown when the children were little, but hopefully it was a tasty replacement for a much-missed treat.

Lemon chicken is one of Mike’s favourite Chinese dishes and given the base ingredients of, well, lemon and chicken, it seemed to be an achievable goal for my home-cooked takeaway. For once I didn’t turn to my trusty sidekick, Google, for some speedy research, but instead just used the knowledge I’ve stored up over the last few years to see if I could come up with my own recipe for a delicious lemon chicken. I originally considered using lemon juice, water and sugar thickened with some rice flour to create the sauce, but a quick perusal of the fridge brought the last remaining half-empty jar of dairy-free lemon curd to my attention and I instantly decided that that was exactly what this recipe needed.

Having prepped the diced chicken to make a batch of my M-friendly chicken nuggets and with the rice simmering on the hob, I turned to making the lemon sauce, feeling a little like I was concocting a magic potion as I stirred spoonfuls of this with a dash of that in the cauldron saucepan. IMG_0637[1]I’m certain that the authentic Chinese recipe includes soy sauce, but with soya definitely banned from our repertoire for the foreseeable, I tweaked the sharp flavour of the lemon curd by adding a little more sugar as well as some salt, pepper and rosemary until I had a savoury sauce I was confident the children would eat. As I finished cooking the rice, chicken and sauce in my trusty wok, G and M drifted to the table drawn by the delicious smell, eagerly asking what was for dinner. The portions I served soon disappeared as did the children once their plates were empty, which, without a doubt, signalled a new and successful addition to my ever-growing list of M-friendly recipes.

Any plans for the weekend?

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We’ve got a weekend in London ahead of us and, being our usual optimistic selves, have planned a whole host of activities to keep us busy at every interval. Thanks to remarkable coincidence, we are able to combine 2 opportunities that have come our way and I’m hoping that Sunday evening will see us back home, exhausted, but also exhilarated by our experiences.

Allergy_Olympia_Logo_2Last year we decided somewhat reluctantly not to make our annual pilgrimage to the Allergy & Free From Show in London as M was in the midst of being tube-fed and had, at that point, only 4 safe foods in hand. Whilst I would have loved the opportunity to explore the offerings we’ve found at these shows in the past, I knew in my heart of hearts that it was more than M would be able to cope with and I wasn’t prepared to put him into what was bound to be an emotion-filled, stressful situation. G and I did toy with the idea of going without the boys, but other events came along and we enjoyed a weekend at home instead. To my surprise, M was incredibly disappointed not to go and was insistent that when this year’s show rolled around, he wanted to attend and was as keen as we have been before. At the start of this year, Mike and I discussed whether we really would go, talked it over at length with M and finally took the plunge and got our tickets for this Saturday. Over this past week or so, M and I have been looking at the businesses that will have stalls in Olympia when the show opens on Friday and he’s already made a note of a few he wants to visit. As I have become more active in the allergy community over the last 12 months or so, especially through friendships built at the FreeFrom Food Awards in February, we are all looking forward to meeting up with some familiar faces during our visit. This show is an amazing event and one that I would highly recommend to anyone living with allergies, or indeed following a vegan lifestyle. You can still get tickets to attend by clicking on this link and the show will be there until Sunday.

GOSH-logoSunday brings a different opportunity and an exciting one for G. When M and I took part in this year’s PLACE assessment at GOSH, I met and got chatting to Fiona Jones, the Children and Young people’s Participation officer at the hospital. One of her roles is to promote the GOSH YPF, or Young People’s Forum, something I had never heard about before, but was interested and keen to find out more. The YPF is for patients, ex-patients or siblings of patients at GOSH who are aged between 11-25 years old and who are interested in expressing their opinions about how GOSH can best support its teenage patients as well as being involved in projects that will help make the hospital experience a positive one for patients and their families. Unfortunately, M is too young to become a YPF member just yet, but Fiona asked if I thought G would like to become involved and I promised to ask her as soon as I could. To my delight, G was excited to be asked to join the GOSH YPF and is looking forward to attending her very first meeting on Sunday. focus-groupBoth children have already been lending a hand by trialling and reviewing an on-line project called Digital Badges, something they have really enjoyed trying out over the last 2 months or so, especially giving their feedback on how this project worked. G will spend her day with this group on Sunday at GOSH, whilst Mike, M and I explore the nearby British Museum and their Sutton Hoo exhibit and I can’t wait to hear all about it during our return journey.

And the money kept rolling in…

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Every year when National Eosinophil Awareness Week rolls around, we start thinking about how we’re going to raise more awareness about EGID, particularly in the public eye. During that first year, our focus was all about our awareness as a family and understanding more about how his diagnosis with this rare condition was impacting on M’s everyday life. As time has passed, we’ve looked for different ways to spread the word, reaching out into the wider community and have found that our efforts have naturally evolved to encompass an element of fundraising as well. Whilst the focus of NEAW is rightly about otwmaking sure more people know about this condition and what it means to be living with it, and donations of time are as valuable, if not more so than those of money, we know that any money we can raise will make a difference to the charities we choose to support.

This year we wanted to show our appreciation for the amazing work done by Over The Wall in running camps for children with serious health challenges, their siblings and their families. The truly fantastic week away that G enjoyed at Easter made an incredible difference to her, perhaps even more than we realised at the time. During a recent conversation with G and M about the Allergy UK Hero awards, we got to discussing the reasons why we might nominate each other for an award. To my surprise G stated that my efforts at finding out about and then sorting out her week away at camp was the best example of how I had made a significant difference to her life as an allergy-sufferer and sibling to a chronically ill child. That comment, for me, sums up just how significant the opportunity to have time away from the stresses and strains of life at home with M and to just be a child really was to her.

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During May, I started to document how our fundraising efforts were going and the different opportunities I had found to raise even more for our chosen charity. We had fantastic support from M’s school, who helped him raise an incredible £81 for OTW and through stalls at local community events and generous friends and family members, we raised another £172. Even better, we still have two fundraising plans in the pipeline, both of which came as something of a surprise to me, albeit a wonderful one. The first came when we were part-way through NEAW16, when I received an unexpected phone-call from the Head of Year 7 at G’s secondary school. Thanks to the continued support from our local press and a well-timed article in the local paper, she had a proposition that overwhelmed me and almost rendered me speechless. Year 7 had an enrichment week coming up after May half-term and, as a lead-in to their week of activities, the year group would be having a non-uniform day on the previous Friday. Her suggestion was that the school would use the day to help us raise awareness of EGID and that the money collected on the day itself would be donated to OTW. indexThe reasoning behind this plan was simple and easy to understand: G and M. They wanted to show support to G as one of their own and, knowing how much she had benefitted from her week away and recognising her commitment to supporting M during NEAW, believed that this was the perfect opportunity to do it.

I was more than happy to agree to this proposal and G was soon on board too. She was asked to write a small piece about EGID, NEAW and OTW that would be shared during tutor time on the Friday morning and each tutor was asked to show their group the short film G and M had created for the week. A well-researched, well-written and fully comprehensive letter was sent out by the school to all families explaining EGID and the charity that the money given on the day would be going to.

This week a cheque was presented to G during the weekly Year 7 assembly for an amazing £280, or thereabouts. The Year 7 Head told me that there were several donations made that exceeded the suggested £1 because the funds are going to a charity that have already helped G and M – something I can’t thank my fellow parents for enough. This money will make a difference to Over The Wall and it’s great to feel that we’re giving a little back. It means that so far we’ve raised an astonishing £530, or thereabouts, which covers half the cost for a child to attend the OTW sibling camp. I don’t know what our final fundraising total for this year will be as there is still one event left to go in August, but I’m glad that we have been able to make such a success of our efforts so far.otw

FreeFrom Eating Out Awards 2016

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FFEOA 16 200X200As promised in my last blog, it’s now the turn of the second of the recently opened awards and one that I’m really delighted to be able to share with you. The FreeFrom Eating Out Awards 2016 are now heading into their 3rd year and are part of the Foodsmatter family  run by the same, highly successful team who organises the FreeFrom Food Awards and FreeFrom Skincare Awards. The Awards were launched to show that creating gluten, dairy and allergen free food that would be as good, if not better, than ‘normal’ food was completely possible as well as encouraging innovation and celebrating excellence in the freefrom food service industry. Working with members of the allergy community, including website Can I Eat There?, experts and bloggers, this year the awards are hoping to find more hidden gems than ever before.

Eating out is a treat that we love to be able to do as a family and I’m always on the look-out for new restaurants to visit with the children, be they part of a chain or independent, especially when I can be confident that they can and will prepare safe food that we all can enjoy. I have already suggested some of our favourite haunts to the #FFEOA16 team and would ask you to do the same if there are any you would love to see recognised for their allergy awareness. These are restaurants who have taken on board the changes to EU legislation back in December 2014 regarding the provision of information about the presence of top 14 allergens in their dishes and, rather than continuing to complain that its cramping their style, have embraced the changes and used them to make a difference.

This year there are 8 award categories:

  • Cafes & teashops
  • Fish & Chip shops
  • Pubs & pub restaurants
  • Restaurants
  • Corporate hospitality and catering – venues and outside catering
  • Hotels & guesthouses
  • Schools, colleges and universities
  • Foods manufactured for food service

Just as with the Allergy UK Hero Awards, it’s great to see such a cross-section of eating out venues included in the #FFEOA, especially the corporate hospitality and schools, colleges and universities categories. I will be watching the progress of these awards with interest and look forward to being able to tell you the final winners after the presentation in late November. In the meantime, I want to share with you the winner of the first ever Pathfinder Award, which has been given by #FFEOA to mark the opening of the 2016 competition. The Pathfinder Award is a discretionary award for anyone, or any establishment, that is really pushing the boundaries of freefrom and thinking outside that box. The 2016 winner is Executive Chef Dominic Teague and his team at restaurant Indigo at One Aldwych Hotel, Covent Garden, for their ground-breaking work in catering for those on freefrom diets.

DT

Last year, after a brief closure for kitchen refurbishment, the restaurant created massive social media buzz when it was revealed that it was now serving a new and entirely gluten- and dairy-free menu and had been for 3 months without anyone realising it. Dominic had been inspired by increasing customer demand for gluten- and dairy-free food and had taken the opportunity of his kitchen refurb to ensure that he could continually create culinary masterpieces in a freefrom-friendly environment. The compliments came flooding in, from regular non-allergy customers and new diners alike and since revealing the truth to the world, Indigo has seen a huge increase in the number of its bookings, which only goes to show it really can be done if only you put your mind to it.

You can find out more about Indigo and Dominic Teague’s revolutionary decision on the #FFEOA16 website here.

Recognising Allergy Heroes

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MzQ1QzM3M0E4MzFCNjM4QjYzMUY6YWUxNzkyMGNiZWRkMjJhNGIyYWI2YTNlNDZiNGJjODM6Ojo6OjA=Whilst we’ve been settling back into life at home after our amazing Italian break, it hasn’t escaped my notice that in the last couple of weeks there have been 2 sets of awards launched – both relating to allergies and both looking at vastly different aspects of the allergy world. One is celebrating people who support allergy-sufferers, be it in a professional capacity or a more supporting role at home, and the other looking for restaurants who go that extra mile to make meals out an option when living with food allergies. The one thing they’ve got in common is that they’re both looking to give recognition to those individuals and organisations whose tireless work makes a difference to those living with allergies and to celebrate their efforts. To make sure I focus equally on both awards as they are both incredibly important in my opinion, today’s post will look at just one set of awards and the other I’ll discuss in my next blog post.

Allergy UK Hero Awardshero-awards-(logo)_cropped_200_165 – this year marks 25 years since Allergy UK came into being as a national charity that is now thought to support around 21 million allergy sufferers across the UK. Not only do they provide a comprehensive support network including a dedicated help line and on-line forum, but they also endeavour to educate those health professionals who work with patients living with allergic conditions. To help celebrate this anniversary in style, Allergy UK has asked for nominations for their Hero Awards, which will recognise the efforts of individuals to help, support and encourage friends, family members and any in their local community who are living with allergies.

There are 5 different award categories to choose between and nominations must be made before 1st July 2016:

  • Child Allergy Hero – a child or teenager (up to the age of 18) who has had the courage to help or has saved the life of an allergy sufferer
  • Family/Friend Allergy Hero – a family member or friend (over the age of 18) that has shown courage and commitment to their allergic child/parent/carer/sibling/other
  • Community Allergy Hero – an individual who has gone beyond the call of duty and has helped, improved or saved a life of someone with allergy in their community
  • Healthcare Professional Allergy Hero – a member of the healthcare profession who helps and manages the allergic patient’s condition and who provides on-going care with commitment, compassion and communication
  • Clinical Team Allergy Heroes – a team of clinicians who have shown care, compassion, communication and commitment to help their allergic patients

awardI am delighted to see that the awards are open to just about anyone and not restricted to healthcare professionals. All too often the unsung heroes are the family members and friends who live with allergy sufferers and the ups and downs that life with allergies throws at them on a regular basis. To be able to give much-deserved recognition to these people is fantastic, although it’s good to also have the opportunity to nominate anyone from the medical community who has provided truly exceptional and perhaps personal care. I will be making my own nominations soon and would urge you to do the same if you feel there’s someone out there who has made a real difference to others living with allergies. The allergy world is often surprisingly small and tight-knit, so I’m looking forward to seeing if any familiar faces have been recognised for all that they do for those of us trying to survive the presence of allergies in our everyday lives.

To vote, please click on this link to the Allergy UK website. It’ll only take 10 minutes of your time and could give a real boost to an unsung allergy hero.