Tag Archives: FABED

A Survival Guide For School & Allergies

The end of August always seems to be something of a surprise in our household. We arrive home from our holiday feeling relaxed and calm and then almost immediately face a madcap race to reach the finish line of shoes bought, uniform named, PE kits found and bags packed before school starts. In years past I have also had to make sure provisions are packed, discussions had and medical notes updated for M, but, for the first time ever, this year I wasn’t trying to squeeze in a critical meeting alongside my own new start with a new job. img_11331I know that next year when M moves up to our local secondary school it will be a very different picture, but after 3 years of working with the teaching community at our junior school, and with no major changes to contend with, M was able to start in Year 6 without this over-anxious Mum hovering in the background.

Without a doubt we have been incredibly lucky with the amazing support given by the fantastic teaching staff at our local school, but we have also had more than our fair share of bad experiences and teachers who don’t care in the past and I can well remember the anxieties and hours of meticulous planning that heralded the start of every new school year. The novelty of not having to head into the classroom before the end of M’s first week back has still not worn off and I’m certain that it’s thanks to the hard work that’s been put in on all sides to formulate strategies that meet M’s needs and to develop a strong working relationship between home and school that is reliant on open communication that flows both ways.

Over the last few weeks, there’s be a lot of chatter in the online allergy community about the fears that surround the milestone of starting school and, with over 8 years of “parenting-a-school-child-with-allergies” experience under my belt, I’ve been asked what tips I would give to any parent facing this situation for the first time. In all honesty, M’s first few years at school were difficult and certainly not the positive experience we would have liked. We had to deal with a SENCo, who trivialised his allergies because they “…wouldn’t have to call 999 if he ate something he shouldn’t…” and refused to recognise how important it was to communicate his allergies and health issues to any member of staff dealing with him and not just his class teacher, which led to numerous occasions of him being offered food he couldn’t eat. His teachers lost their focus in teaching him because they felt he already had a lot to cope with with his regular appointments at GOSH and his education suffered as speech impediments, dyslexia and dyspraxia were missed by those who worked with him on a day-to-day basis.

Fast-forward to the start of Year 3 and all our negative experiences became a thing of the past. The year actually began at the end of Year 2, when I met with the Head, SENCo and class teacher of his new school to discuss all of M’s health and educational needs and worked with them to put practical solutions into place before the term started. They understood the value of seeing him as more than just his EGID and food allergies, circle-timebut also knew that his health problems were a big part of his everyday life and couldn’t be ignored. At the end of his first week there, M’s teacher held a circle time in class where she shared about M’s ill-health and restricted diet with his classmates. It was done in such a nurturing and non-confrontational manner that by the end of the session M was willing to answer any question that his new friends had about what they had been told himself and has being doing so ever since.

fabed1The information sheets that I had provided were given to the teachers and, combined with the notes they had taken whilst talking with me, used to draw up a healthcare plan for M that covered all possible situations. His on-going bowel control problems were sensitively handled and a contingency plan put in place to ensure that he always has access to a toilet wherever he is in the school. The HCP was written by the school SENCo and then sent home for my review before being published, shared with the whole teaching team and displayed prominently in the staff-room. Even better, every year since then I have been asked to review and amend his HCP to reflect any medical changes that have happened and the school continue to be sympathetic to his needs.

SAM_1175As for his swap box, it has proved to be an invaluable tool in the classroom setting and is something that is really easy to implement. The idea behind the swap box is a simple one – it contains a selection of safe items, be they edible or non-edible, that can be swapped for those unexpected treats that sometimes come into the classroom to celebrate birthdays or other special events. When M’s swap box came into being, it was filled with a mix of Haribo sweets and the odd Lego minifigure and the choice was his as to what he chose to take. Since going elemental 2 years ago, the box now contains Lego, trading cards and other fun small toys and ensures that M never feels that he is missing out when his friends celebrate. What’s more, his teachers have taken inspiration from it for their own purchases of small gifts at Christmas or the end of term and given him something he can enjoy.

I think the biggest secret to our great experience with our Junior school is communication. The lines of communication are always open and actively work in both directions between home and school through meetings, phone calls, e-mails and the home/school book. The willingness of so many of the school staff to learn to support M to the best of their ability has created a level of trust unlike any other and means that I am ea544311f5697d6334b2df7079ccedf9happy to leave M in their more than capable hands on a daily basis. It is a testament to their dedication to their work that, in the last 3 years, the only things that have caused an extended absence from school have been the annual hospital admissions at GOSH. They have always endeavoured to make sure that M is safe whilst at school and the fact that he was able to attend as normal with both his NG feeding tube and his broken leg is incredible. A truly remarkable relationship has grown over the years between our family and so many of the teachers and is something I really value.

They have also nurtured and encouraged M to talk about his allergies and EGID and have shown continued support as he has become an advocate for educating others about his illness. M has held cake sales, run playground games and created short films explaining the impact his diagnosis has on his life. He has developed a confidence in talking to others and 18 months ago was able to answer the questions asked by members of home-school-connectionevery class in the school. When he left his Infants school, he was a child reluctant to talk about his food allergies or hospital appointments because he was scared of being isolated and bullied because of how different he was to everyone else. These days he has an incredibly strong friendship group who look out for him during school hours and think about him when he’s had to be in hospital, and he never thinks twice to share what’s going on with his friends.

If I had to sum it up, I guess I would say this:

Be open, be honest, be available. Keep communicating and tell them how they can make it better if you need to. Do what you can to help them out and don’t forget to say thank you when they get it right.

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

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.

Lasagne – an unusual last supper!

I’ve been fascinated looking back over the last 4 awareness weeks and seeing how our approach to “Eating like M” has developed over time. When we first started in 2013, we chose to eat the foods that M could eat at the time, even if they were things he wouldn’t have touched with the proverbial barge pole such as mushrooms, tomatoes or courgettes and followed the lead of other EGID families by eating exactly the same as him on the Friday, including the much-dreaded Neocate Active. Year 2 followed a similar approach, though Mike matched M mouthful for mouthful on the Friday to truly understand what it felt like to be on his diet and again drank the obligatory pint of Neocate for full effect. By 2015, M’s diet had changed dramatically and when we hit NEAW15, he had only 3 safe foods he could eat. Despite initially rejecting the idea of eating like M, IMG_0496[1] Mike and I decided we would once again support him through what was proving to be an extremely challenging time and agreed to spend the week with just 3 foods making up our 3 meals with a litre of E028 to wash it all down for Mike.

2016 has taken us another step forward in our “Eating like M” adventures and this year saw G choosing to stand in solidarity with her brother and join in our week with just 5 safe foods. I am so proud that she decided to take part in this challenge with us and stoically managed the week without complaint. Once again, our week led to opportunities to share our family’s EGID story with others, including Mike’s discussions with fellow attendees at a fully catered RICS training course in London. He had expected the standard buffet lunch to be provided and had armed himself with rice-cakes and apples to get him through his day, so the hot meal that was prepared on request to meet these strict dietary requirements was a more than pleasant surprise.

One of the highlights of the week for me was our final meal on the Saturday night. I had been looking for the perfect opportunity to try out what was, to me, a completely new product and our last M-inspired dinner gave me that chance. I first heard about this product back in February at the #FFFA16, when fellow judge, Stanley Montwedi, founder of online shopping website FreeFromMarket recommended it to me and couldn’t stop raving about how amazing it was. IMG_0469[1]With NEAW16 in mind, I had ordered a couple of boxes from him and knew exactly what masterpiece I’d be whipping up next.

As a family we have always enjoyed eating pasta, but M’s food restrictions have made enjoying a variety of different pasta dishes almost impossible. Thanks to this new-to-me range of products, that is no longer the case. Rizopia Organic Brown Rice Lasagne was actually the winner of the 2015 Free From Food Awards Pasta & Pizza category and I must say that it was definitely a worthy winner. I used it to make a M-friendly chicken lasagne, layering strips of chicken with the pasta sheets and lashings of white sauce flavoured with basil and oregano. I didn’t pre-soak the sheets as per the cooking instructions, but given the limited sauce that could be added to my lasagne, we all found them quite chewy, so I think I will try soaking them beforehand the next time I cook it. And believe me, there will be a next time because the whole family was impressed with this dish. M enjoyed it so much that he asked for it for lunch and dinner 3 days in a row and was most disappointed to discover that it did eventually run out! The Rizopia rice pasta range includes lots of different shapes of pasta which are all safe for M and will add some much-needed variety to his meal-times.

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When home life met the school science class

It does sometimes take a while for me to catch up on my blog with what’s been happening in real life, but a near 4-month gap to report much be something of a record, even for me. I’m not entirely certain why it has taken me so long to share this story, but I can only imagine that the constant stream of events since the start of February pushed it out of my mind and it was only thanks to a search through some old photos last night whilst I was looking for something else, that my memory was jogged and the subject for today’s post settled. What now feels like many moons ago, G was set a creative homework, something that she was excited to do, but a little stumped as to the direction she wanted to go. The task was to make a model of a cell for science and the options available were seemingly endless. checkThere were no strict guidelines as to the type of cell to be created and she had free reign as to the medium of her model, with even cake being a possibility if she so wanted. As is often the case when tackling the more challenging pieces of homework set, G and I spent some time discussing at length what she could do before reaching a decision.

She had made a few uninspired suggestions, but I could tell her heart wasn’t really in them and her enthusiasm waning. G loves being creative, art being one of her favourite lessons at school and I knew that if we could only settle on the right cell, she would soon warm to the subject and give her all to making the best model she could. So often I’m reluctant to drag EGID into G’s world any more than is necessary, but this time I wondered if researching and then making a model eosinophil would be the answer to her dilemma. 10562609_10153256228956123_3212893174847273723_oTo my relief, as my fount of inspiration was certainly beginning to run dry, she loved the idea and instantly sat down to research as much as she could as, whilst we know all about what eosinophils do in the body, we didn’t know what an individual cell looked like.

Having found some good images on the internet, G then addressed the matter of her model-making. Despite an initial yearning for cake-baking and decorating that appealed to her 12 year-old senses, although a lot less to me, we instead headed off for a trip around our local craft shop and pinpointed the few essential items that would effectively illustrate the structure of an eosinophil without requiring too much parental input and inspiration. A quick tutorial once we were back at home on how to best construct her cell gave her all she needed and I left her to it at the kitchen table, whilst I busied myself in the same room, preparing packed lunches and dinner. Her finished model was fantastic and the diligent labels indicating the different part of the cell were the result of her focused efforts and careful work. What’s more, her model eosinophil proved to be the catalyst for other work that she chose to similarly link to her experiences of EGID and which ended up with her showing last year’s NEAW video to her science class to teach them more about the condition. G has been rewarded for her hard work by her science teacher with some much coveted house points and we’re so proud that she felt confident enough to share an aspect of her home life with her school science class.

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NEAW 2016 – All over for another year

With a blog post a day for the last 7 days as well as daily mini fact updates via my FB page, you’d think that I’d be glad that the EGID awareness week has finally drawn to a close. There is, I admit, a certain relief that the busyness of the week is over and I can at long last pause and take a breath, but just as EGID is a constant presence in M’s life, so raising awareness of it will continue to be an important part of our family’s life. A good friend and fellow EGID Mum has asked me to share her reflections of last week, which I am delighted to do as, as she says in her final line, “Knowledge is important this week and every week.”

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National Eosinophil Awareness Week 2016,

A time to share personal experiences,

Taking time to tell others what it’s like to live with or care for someone with an Eosinophilic Gastrointestinal Disorder (EGID)

Inviting those who have never heard of EGIDs to find out more,

One way to help raise awareness,

Not for self but for others as we are,

All in this together, the EGID community, so,

Let me tell you a little bit about what it’s like to be the mum of a child with EGID.

 

Elevated levels of eosinophils in the gastrointestinal tract are often disorder indicators,

Often this will mean that there will be pain and possibly inflammation,

Sometimes this will mean that there is a need to exclude foods; sometimes many, sometimes all,

Ige or non-IgE mediated food allergies may also be present, but not always!

Naso-gastric tubes and elemental nutrition may be the only way to manage symptoms,

Often the only option for many is a feeding tube as the body struggles with food proteins,

Pain, discomfort, nausea, altered bowel habits are just a few of the symptoms,

Hospital visits, hospital stays, invasive tests, medications and restricted diets become a part of life,

Illness can be socially restrictive; days, weeks or months may be lost to ‘flares’,

Life can be difficult for those diagnosed with EGIDs.

 

Awareness aids understanding of EGIDs,

Watching what you eat, if you are able to eat, is central to managing symptoms,

Avoiding known triggers, being a food detective, scrutinising labels, are also key skills that need to be developed,

Research is important; finding a cure and raising awareness of what it’s like to live with an EGID,

Education is also key to raising awareness and understanding of the impact of EGIDs,

Networks are central to enabling those with EGIDs to feel supported by those who understand

Eating … when food is the issue, is an issue …,

Support from others; a community of people who understand what it’s like when someone is diagnosed with an EGID is so important,

Societal understanding though will help those with EGIDs to engage more with their communities.

 

We hope for a future where the disorders are better understood, when we don’t have to fight to be heard,

Enabling those with an EGID to share their experiences with others can help this,

Eventually we hope for a cure or better ways to manage the disorders,

Knowledge is important this week and every week; please take a moment to read some of the stories shared by those living with EGIDs.

NEAW 2016 – Teaching the world

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It’s what this week has been all about. A daunting brief when you think about it, something you never expect to have to do, but sometimes life has a funny way of turning all your plans and perceptions and pre-conceived ideas on their head and sending you off in a completely direction to the one you expected to take.

Without a doubt, every new parent looks forward to the journey they’re about to embark on, albeit often with more than a little trepidation about how they will cope and they start with ideas about how they will deal with feeding and sleeping and routines. They might plan to follow in the footsteps of parenting gurus like Dr Spock, or Gina Ford or Jo Frost, after all they’ve read the books and seen the TV shows; or perhaps they think they will take a more relaxed approach, where routine is dictated by the child and everything becomes an opportunity to learn. Of course, you quickly realise that however much you’ve studied the subject beforehand, your baby hasn’t read the same manual and your best-laid plans go out of the proverbial window. No matter the milestone reached – that heart-melting first smile, the scent of your newborn as she snuggles into your arms, the infectious sound of his giggle, 858052_10151297690626123_2130461112_othat quizzical first taste of food or teetering first step – as Mum or Dad you’re there to love and encourage and cheer them on.

When we started our family, Mike and I prepared ourselves to answer their every question as best we could. We anticipated having to deal with the never-ending whys and knew we would need to find truthful words to reply to the most personal questions with simple honesty. We understood our role was to teach them about the world surrounding them, even the unpleasant bits, and equip them with knowledge and understanding and the skills to withstand the buffeting winds that life would inevitably send in their direction. We couldn’t know what storms we would need to weather together

There’s no question that having the responsibility of educating our community about the most precious of subjects is often scary, but it’s one I embrace wholeheartedly and honestly feel that it’s a privilege to have found ourselves in this role. It’s about so much more than being M’s advocate or defending G’s corner, although those form the greatest part of my job. It’s about sharing the lessons I’ve learned and, with that, it has become about explaining to others the nature of M’s chronic illness and the impact it has on our lives. This morning we spent a few hours at our community market, our information boards proudly on display, leaflets ready to hand out, a few bits and pieces placed to try to raise even the odd penny more for Over The Wall and most importantly, a smile on our faces that meant we were willing to answer questions, to explain, to share even the tiniest bit about EGID.

By the time we finally gave in to the cold and the rain, packed up and left, I had spoken to over a dozen people, who wanted to learn a little more and were genuinely interested in what we had to say. Not only had we had opportunity to teach our community, but I found that in response, people had felt able to share their stories and really talk about things that were close to their hearts. A lady whose daughter had been oxygen-starved a birth over 30 years ago and who had sadly lost her last year was able to empathise with the challenges of juggling family life and meeting G’s needs as much as we do those of M. Another woman, who had been diagnosed with Coeliac disease a few years previously, shared her disappointment that those around her still struggled to offer gluten-free options, d5de7-screenshot2014-05-14at20-22-03instead simply opting for something “safe”, but infinitely less satisfying such as fruit or yoghurt to replace the cakes and biscuits they were enjoying. And a family, who had seen our story in the paper and were longing to talk to us about their daughter, who had been struggling with gastro issues, eating disorders, anxieties and food intolerances since she was 11 and even now, at 37, found the medics lacking insight and understanding and unable to help. I don’t know that really I could give more than a sympathetic ear and insights from our own experiences with M, but I also know just how valuable those small things can be.

Have we achieved what we were hoping from this week? I think so. I’m proud that we’ve worked hard as a family to raise awareness of EGID and hope, that in some small way, we have taught our world a little more about it.

NEAW 2016 – Giving from the heart

I can’t deny that this week has been a busy one, in fact, given we started our #NEAW campaign at the start of May, the whole month has been non-stop and it’s not showing any sign of slowing down just yet. The last couple of days have been particularly amazing and I’m still buzzing from the success of a combination of planned events, chance e-mails and an unexpected phone-call.

Today has been a real highlight for me. A few weeks ago, M asked the Head of his school whether as well as showing his EGID video as part of a whole school assembly during #NEAW, IMG_0460[1]he could also organise some break-time games to raise some money for Over The Wall, our chosen charity for this year. Having received the go-ahead, it was all systems go at 7Y2D HQ and M recruited some of his friends to help run the games on the day, whilst I put my thinking cap on to come up with some games that would appeal to the children as well as raise some awareness of EGID. We settled on 3 different games: Guess the name of the dog – he was called Phil after those pesky eosino-phils that cause all the problems; Guess the number of sweets – these were Foxes Glacier Mints as they are the only safe sweets M is able to eat and were crammed into one of his feeding bottles and the Eosinophil Treasure Map – find the eosinophils on the body to win a prize. I arrived at school ahead of morning break to set up the room and my helpers, including M in his wheelchair, turned up just ahead of a throng of excited children, eagerly clutching their money ready to have a go at the game of their choice. It proved to be such a roaring success that the queue was out of the door and I was asked if it was possible to come back for another 30 minutes during the lunch-hour, which of course I was delighted to do. In the end, I spent an hour and a half talking to a number of children about M’s condition, what we were raising money for and answering their questions as they thought of them as well as supervising the games. The school raised an amazing £81.30 for the charity and I am incredibly grateful for the support of parents, children and teachers alike who made the day such a huge success.

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There are some more amazing fundraising opportunities coming up and I will be updating my blog as each happens.

Of course, we are delighted with the success we’ve enjoyed so far, but the giving is about so much more than the money we’ve raised for a fantastic charity. Earlier this week, FABED asked for a donation that comes from the heart and will have a long-lasting impact: the gift of time. The gift of 5 minutes to read more about EGID; the gift of the time it takes to share a blog post or information on social media to educate those around you about this illness; the gift of spending time talking to a family living with the condition to understand what they’re going through and maybe even offering some time to help them out, even in a small way. Never underestimate the effect of a friendly smile, a sympathetic word or the offer of a cup of tea. To an EGID parent that could be the action that saves their sanity on that day or helps them feel that they’re not fighting this battle on their own. If you can give a small donation that’s great, but your time is priceless.

 

As well as raising awareness of EGID this week, we are also fundraising for Over The Wall Serious Fun camps. If you are able to donate, even a small amount, that donation with make a big difference to children like M and G, who benefit massively from these camps. You can donate via my Just Giving page or the link on the side of this page. Thank you!

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NEAW 2016 – The Hidden Truth

invisibleillness

The Hidden Truth:

We may not look sick, but turn our bodies inside out and they would tell different stories

Wade Sutherland