Category Archives: Chronic Illness

All the Fun of the Fair

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

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?

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…

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

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.

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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

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.

A European approach to Allergy-friendly food

IMG_0515[1]Given our Italian break was courtesy of a competition win through the Allergy and Free From Show and Dr Schär, it didn’t come as any surprise that there were several gluten-free items available at the amazing Vigilius Mountain Resort. However, what we didn’t expect were the allergy-friendly offerings we discovered from the minute we arrived at Munich airport and these were the things that possibly impressed us the most. Mike and I had a 2-hour wait in Munich before the shuttle-bus arrived to take us to the hotel. It wasn’t really long enough to venture into the town itself, but gave us more than enough time to explore the airport and its shops. I was particularly keen to see if I could spot any of the German delicacies featured on the Munich episode of Paul Hollywood’s City Bakes and was delighted to be able to snap a quick photo of freshly made pretzels to show M when we got home.

IMG_0516[1]Having exhausted most of the shopping opportunities available to us, we decided to take a quick whiz around the small supermarket before heading off to meet the bus. You can only imagine my surprise and absolute delight when we stumbled upon this fixture filled with dairy-free alternatives, including the all-important rice milk that is now a staple in our household. There was a slightly smaller unit with an array of gluten-free products too and browsing the store’s shelves and fridges, I was able to pick out with relative ease other allergy-friendly foods. I think what impressed me the most was this was a small supermarket at the airport. Not some major out-of-town hypermarket, but somewhere where travellers would stop to pick up a few essentials before heading on to their final destination. Obviously I can’t comment on what would be found in larger stores around Germany, but this bodes well for what I can only imagine you might be able to buy. We have had mixed success in finding safe foods for both M and G whilst on our holidays in the past and this summer will be travelling back to Portugal for the first time since M’s diet became so restricted. I can only hope we find as good a selection as we stumbled across in Munich.

TIMG_0552[1]he Vigilius resort is owned by Ulrich Ladurner, who is also the founder and president of the Dr Schär group and so it comes as no surprise that every meal has gluten-free options available if wanted. Breakfasts consist of an amazing buffet containing just about everything you could conceivably want – cereals, pastries, fresh fruit, cold meats, fruit juices, smoothies, cooked breakfasts and cheeses. There was a separate section for the gluten-free choices and I was pleased to see that soya milk, local goats milk and cheese and dairy-free chocolate sauce were available too. Our evening meals at the resort were delicious and despite our initial plans to visit Lana for dinner on a couple of evenings, Mike and I ended up choosing to stay in the hotel and eat in their restaurants. There are 2 restaurants at Vigilius: the delightful Stube Ida serving regional dishes and wine, and the more formal Restaurant 1500 with exquisite and interesting menu choices. The menus were clearly annotated to show which dishes could be made gluten-free and gluten-free bread was also available on request. We enjoyed every meal we had there, and whilst we didn’t choose to eat the “Variation of Carrots” for our main course – Tartar of carrots, carrot-ginger cream, crunchy carrot peel and carrot spaghetti with curry and carrot gel – ,IMG_0539[1]the “Herbs of the neighbour” dessert – Herb cookies, herb chocolate ganache, hay Chantilly, camomile Panna cotta and lavender ice cream – was phenomenal, even if the occasional thought did flash through my mind that it was a little like eating a bowl of pot pourri! We chose to drink regional wines with our dinners, grateful to receive recommendations from the serving staff, who introduced us to some that have quickly become new favourites.

IMG_0637[1]In comparison, our lunchtimes were spent at various of the many gasthauses in the mountains surrounding the resort, where we chose meals that were equally delicious, but much simpler dishes than those we enjoyed for dinner. We frequently opted to share platters of local products, such as fennel bread, speck, goats cheeses and other cooked meats and of course, washed these down with a glass of local beer. Friends have told me that eating gluten-free in Italy is relatively easy and our experiences would suggest that to be true as we found a gluten-free section to a surprisingly extensive menu in a small, remote gasthaus at the top of Monte San Vigilio. I have to confess that we didn’t put these allergy-friendly options to the test as we relished the opportunity to eat “normally” without M and G around, but Italy has definitely become a potential destination for us in the future.

IMG_0557[1]Our final foodie surprise was on our way back to Munich, at what was advertised as the “last service station before Austria.” The journey to the resort on the Monday had been non-stop, no toilet breaks or opportunity to stretch our legs even once during the 4 hour trip. However, thanks to the driver of our return journey, who evidently considered himself to be the Michael Schumacher of the public transport world, we somehow managed to save time and were allowed to stop for 20 minutes near lunch-time. As we wandered around the service station looking for something quick and easy to eat before we climbed back on board, I also kept my eyes open for any last-minute goodies I could pick up as small presents for M and G from our holiday. Amongst the bumper-sized packs of pasta, bottles of olive oil and chocolate bars, I also spotted boxes of gluten-free rice flour cookies sitting in plain sight alongside their non allergy-friendly counterparts, something I’ve never seen in a service station in this country. Our holiday was a real eye-opener when it comes to how this part of Europe tackles the matter of allergy-friendly foods and has made us more confident to spread our wings and travel there with the children when time allows.

Vigilius Mountain Resort

IMG_0685[1]Our retreat for those four days away was the beautiful Vigilius resort, 1,200 metres up the Monte San Vigilio in the Italian Alps and only accessible by a 7 minute cable car ride. Mike and I had arrived in Lana, the small South Tyrolean town at the base of the mountain, at around 5pm and headed immediately to the cable car station, where we waited patiently for it to be fixed before we headed up to the hotel. It had been an early start and a long day of travelling, but as we stepped out into the idyllic atmosphere of this peaceful location, all the stresses and strains gently started to slip away. IMG_0595[1]We were met at the cable car station by one of the hotel staff, who offered to give us a brief tour of all the facilities before booking us a table at one of the restaurants and settling us into our room for the evening.

This is an ecologically friendly and sustainable resort, where neutral colours and careful simplicity create a peaceful retreat from the hustle and bustle of everyday life. The rooms are spacious and open, with stunning views of the mountains – the Dolomites and the Alps – on every side. It took a little getting used to the open plan nature of our room, where the bathroom area and bedroom were separated only by a strategically placed small clay wall that gives a slight nod to a sense of privacy. IMG_0524[1]Every room includes a stereo system, but no televisions, though they and DVD players can be provided on request and whilst wi-fi is provided free of charge, it is switched off by 11pm every night creating the opportunity to be as technology-free as you want during your stay. The facilities include 2 restaurants, a library, inside and outside seating areas as well as eternity pool, whirlpool and spa. It really is a place designed for relaxation and indulgence in equal measure.

Our days were wonderfully lazy as long and late breakfasts were followed by time spent alongside the pool or exploring the local area. On 2 separate days we took the single chair lift up to the top of the mountain and followed the well-marked trails to discover astounding panoramic vistas, remote churches and wonderful gasthauses where we enjoyed simple lunches of the local specialities – speck, cheese, fennel bread  – and the occasional glass of beer. We also took the cable car back down to Lana, where we spent some time searching for postcards and goodies for M and G as well traipsing between some of the 40 churches and monasteries to be found in this vibrant Italian market town. IMG_0678[1]This area is bilingual with all signs and menus written in both Italian and German – that 8-week Italian course in the 6th form finally came in handy – and we found most of the people keen to practise whatever English they could.

The resort itself offers a range of activities to its guests, including hiking, mountain biking and other fitness programs, though Mike and I only watched an archery session from afar. We did, however, spend a lot of our time in the pool, sauna, steam room and spa, enjoying the peace and quiet of the mobile-free area as we swam in the eternity pool and relaxed in the indoor and outdoor whirlpools. Thanks to my Mum, I was also able to pamper myself one afternoon with a peel, wrap and full body massage. Two hours later, I rejoined Mike poolside before we headed back to our room to prepare for our complimentary evening aperitif before a late dinner in one of the fantastic restaurants.

Without a doubt, Mike and I enjoyed a fabulous time at the Vigilius Mountain Resort and left feeling more relaxed and rested than we have in a long time. The hotel staff were friendly, polite and helpful and made our stay a wonderful experience. It was a great opportunity to spend time together, without the pressure of having to cope with the everyday juggling act that is the constant needs of the children, work and home. We wouldn’t hesitate to go back to Vigilius again should the opportunity arise and I would love to explore more of the surrounding towns of the South Tyrol.

*Disclaimer – Our 4-day stay at the Vigilius Mountain Resort was courtesy of a competition prize won at the Allergy & Free From Show Liverpool and sponsored by Dr Schar UK. The views expressed in this review are entirely my own and those of Mike.

The Italian Job

Sometimes you just need some time off; a week away from it all; an opportunity to have a break from the everyday, to just rest and relax and be. The thing is that that is hard enough to achieve when you’re a parent and near on impossible when you’re a special needs parent. The stress of leaving your chronically ill child with someone else, even when accompanied by a small novel’s worth of detailed instructions about what to do in every possible and conceivable situation, threatens to overwhelm and can seemingly be insurmountable for a day or two, let alone more than that. Mike and I are lucky that my Mum lives close enough to give us some nights off during school holidays, but those days usually mean longer hours at work for me as I attempt to make up time missed for hospital appointments with M and include only the occasional trip out to the cinema or for dinner somewhere where we aren’t tied to the essentials of chicken, rice and cucumber of our everyday menus.

Last December, in fact the day before M was admitted to GOSH for those disastrous food challenges, I received a Facebook message out of the blue from one of my fellow FABED Mums:

“Is that you that has won a trip to Italy with schar? Saw Twitter post? Congratulations x”

and have to confess that at that point I had absolutely no idea what she was talking about! A quick unscheduled peek at my Twitter feed and a long look at my e-mails later, I was stunned to learn that she was indeed right and I had won a 4-night stay in Italy thanks to gluten-free producer Dr Schar and the Allergy and Free from Show, Liverpool. It has taken a little while to put all the necessary pieces in place, but finally, last week, 6 full months since I first received that message, Mike and I left G and M in my Mum’s more than capable hands and jetted off for a much-needed break from it all.

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Getting to that point did take some effort and there were last-minute wobbles before we finally left. It took an unbelievable amount of time to confirm the dates for our hotel stay due to the relaxed attitude of the Italian hotel staff and our flights were researched and scheduled by me once I knew the preferred airports for us to travel to and from. Two nights before we left, Mike questioned whether we really could go abroad given M’s current ill-health, but we trust my Mum implicitly and knew we needed to take some time for ourselves. That’s something that my Mum supported fully as she knows that reality as well as we do due to my T1D diagnosis at age 9. The truth is that you should never under-estimate the impact of a sick child on a marriage: the focus naturally shifts from each other to that child and home life inevitably revolves around what they need in every waking moment. In our household, those needs have not just been during the day, but at nighttime too as M’s sleep issues have been an ongoing problem that we continue to struggle with and every time we seem to be making some headway with it, something happens to set us back to where we were before. His broken leg has been no exception and has added to that regression as it has seen us playing musical beds with G moving to M’s cabin bed and Mike to G’s room to give M the comfort he needed to enable him to sleep in the weeks following the accident. The physical strain of looking after M with his broken leg has taken its toll on me, leaving me exhausted and Mike and I have had little time to spend with each other without interruption.

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Our plane is the one on the left, which looked tiny when seen next to the Easyjet one also waiting for passengers

Last Monday passed in something of a blur and proved to be a long day of travelling with more than its fair share of minor hiccups along the way, just to keep us on our toes. We were up at 3.30am to reach our regional airport before a 6.30am flight to Munich, followed by a couple of hours waiting at the airport before our shuttle bus arrived. Then there was the 30 minutes of pure stress as we failed to connect with the shuttle bus due to the unclear instructions as to where to wait that were written on the booking form and my tears of panic as Mike desperately tried to find a helpful German airport worker to help him communicate with the bus company, before all was finally resolved and the driver turned around to pick us up. IMG_0522[1]The following 4.5 hours in a minibus without functioning air-conditioning and unable to communicate with said driver due to my lack of German and his lack of English was interesting, though we drove through some amazing countryside and realised that 4 countries in 1 day (UK, Germany, Austria and Italy) was a record even for us. We finally reached Lana, our Italian destination, only to discover that the cable car to the hotel – the only way to reach it – had broken down and we were destined to wait for an indeterminate amount of time as the statement that “..it might be 5 minutes, it could be 30…” was accompanied by an unconcerned shrug. But, we got there in the end and, having reached what is an amazing resort, it was, without a doubt, all worth it in the end.

Hollywood-inspired

13227528_948528031911468_2074589086660293308_oIt never ceases to amaze me that there is a huge number of allergy-suffering children out there who love nothing more to cook despite their dietary restrictions. I know of so many EGID children, even those with feeding tubes, who have a passion to cook and have taken qualifications in food technology, even though there may be very little they can eat. One such story that has recently hit the headlines is of Abigail Carper, who is living with Eosinophilic Esophagitis (Eoe) in the US. She wrote to well-known celebrity chef, Gordon Ramsay challenging him to cook using only the limited safe foods she currently has and was delighted when he not only agreed, but invited her to join him in LA, where he prepared a meal that her Mum described as “a heavenly phenomenon“. It’s encouraging to hear that Gordon Ramsay and his staff also took the time to understand more about EGID, how to correctly read food labels and which foods could and couldn’t be used in their tailored meal.

Big thanks to Abby and her Mum for allowing me to share these photos of her amazing day

M and G are no different and both love watching cooking programmes on TV almost as much as I do. BBC offerings such as the “Great British Bake-off” and its recent spin-off, “GBBO Crème de la Crème”, are constant favourites in our household and nothing beats the high-energy episodes of “Diners, Drive-ins and Dives” on the Food Network Channel when there’s 30 minutes to spare at the end of the day. All of these have led to requests from M in particular for me to enter the competitions or invest in a restaurant for Guy Fieri to visit, thus showing off what he thinks of as my considerable culinary skills. Despite the massive compliments from what must be my biggest fan, I’m not convinced that my M-friendly bakes would live up to the standards expected on our favourite shows and I won’t be entering any cooking competitions any time soon. Unless an allergy one pops up and then I might…just might…be tempted!

As well as being amazed by the creativity and culinary techniques of the chefs on these programmes, I also find myself being inspired by their bakes and thinking through whether any of the recipes can be tweaked to bring something new to M’s diet. I know I’m not the only one as fellow EGID Mum and friend Berenice, kindly wrote a guest post for me last year about her attempt to create an allergy-friendly Madeira cake, after seeing an episode of GBBO. No matter the time of year, there always seems to be one programme or another that we can enjoy together as a family and this May has been no different. All it took was a single 30 second trailer and M was smitten, this time with “Paul Hollywood City Bakes“. 566777371_960, which sees Paul Hollywood, one of the stars of GBBO, visiting cities around the world, investigating their bakes, meeting bakers and putting his own unique twist on a speciality dish in each venue.

M has been entranced by the entire series, which has proven to be a great distraction from his broken leg. From the laws surrounding the baking of a particular cake in Munich, to the bullet-ridden suite, location of a mafia killing at the Biltmore in Miami, he has hardly paused for breath when regaling anyone who’ll listen with the stories that those half-hour episodes have shared. We now have a long list of “must-go-to” holiday destinations that both G and M are desperate to visit as soon as it’s even remotely possible. G was delighted to see a couple of naturally gluten-free bakes highlighted and even better, there have been the occasional bakes which I am sure I could translate into M-friendly versions without too much effort. I’ve yet to decide which of these I will turn my hand to first, but you can be certain that I will share those recipes once they’ve passed the rigorous testing of my discerning duo.