Tag Archives: Eosinophilic

On this Day

One of the things I enjoy about Facebook is the “On this Day” look back at the previous statuses you’ve posted on that day in years past, which is how I realised that today marks 4 years since the start of this blog. I’ve come,..we’ve come a long way since that very first post and have had more experiences, opportunities and adventures that I ever imagined possible. I’ve made some wonderful new friends and have been privileged to be able to lend support to those at the very start of their journey. We’ve met some amazing people and I can’t wait to discover what the year ahead brings.

Thank you for being a big part of my blog and continuing to support us every step of the way.

From all angles

The last few months have been busy ones in all areas of our life, which I haven’t been shy in talking about, but the one aspect that I haven’t mentioned for quite some time is where we are health-wise with M’s EGID. You could view the reason for the radio silence as a good one – we haven’t really been making any significant progress and everyday continues to be a battle to see if we can reach and maintain some semblance of status quo for a decent length of time. I’ll be honest, since March things have been quite challenging as we have had little medical support and we have felt, at times, as if we’ve been cut loose and are paddling desperately to make some headway by ourselves. The reason for the missing input is that we are in the process of trying to build a shared care relationship between GOSH and our local hospital once again and at long last do appear to be making bmd6e7zcyaef7disome progress, albeit very slowly. We last saw M’s GOSH consultant in the middle of March, when it was somewhat reluctantly agreed by us that we would wait until November for his next GOSH appointment with the plan being that we would meet and then have an appointment with our local gastro team during the interim period.

It may well come as something of a surprise that we are even considering transferring some of M’s gastro care back to our local given the  numerous problems we’ve had in the past, but this time we were encouraged by the fact that his new gastro consultant is a registrar that we got to know whilst at GOSH and someone we trust implicitly when it comes to M and his health. Dr W, who has invited us and M to be on a first-name basis with him, was instrumental in getting M admitted 2 years ago when we made the decision to move to elemental feeding and so is someone who knows something of M’s background and understands where we, as his parents, stand when it comes to treating this disease. We are also keen to gain some local support for M because, when crisis hits, it is very difficult to get any immediate care from GOSH due to the distance we live from the hospital and the inability to just pop along there for them to review his current state of health. There is a standing agreement that we can phone and discuss him with any one of his consultant’s team, but sometimes that isn’t enough to resolve the issue as quickly as we all need. supportDr W had already agreed with GOSH that he was happy to meet with us and look at the potential possibility of taking over some of M’s care during last year’s disastrous admission and he understands that there is a trust issue between us and our local hospital that he and his team will need to work hard to re-establish – something that is so critical to M’s well-being.

With a little prodding, it didn’t take too long for Dr W to give me a call and then for an initial appointment to arrive on our doormat and Mike, M and I met with them in the middle of June. At this point, M’s broken leg had unleashed an unexpected level of havoc on his body and we were struggling to manage the ever-fluctuating bowel issues as well as his increasing reluctance to drink the E028 and huge disappointment that we couldn’t undertake any food trials whilst he was so unstable. The team was great, but it really was just a conversation about what we were looking for and what they felt they could do for us. A few interesting insights and suggestions about M’s diagnosis were thrown out, but there was no opportunity to ask questions about them and now, 3 months on, our reflections have left us wondering about what the next steps will be. What didn’t come as a surprise was the question mark over whether M is truly suffering from so many genuine food allergies or rather if there is an underlying problem with his gut and/or bowels which means that he is unable to tolerate so many foods at the moment. This has been a question that has been stumping his GOSH dietician too, who has freely admitted to finding M one of her most challenging patients ever and is hoping our local will provide a fresh pair of eyes when it comes to considering how best to treat him. Dr W also expressed a concern that 20150203_082342M would eventually stop drinking the E028 altogether and stressed that we need to find a viable alternative before we reach that point. This has proved to be remarkably insightful as it is now one of the biggest issues that we have had to contend with since that June appointment, with M struggling to drink even half of the required amount and with no new foods in his diet, there are growing concerns about both his weight and his nutritional intake.

Just before our Portuguese holiday, I contacted our GOSH dietician to discuss with her the lack of progress we’ve been making with M and asking for her input as to what we should do next. The email reply I had came as something of a concern as she explained she was under the impression that all care had been moved to our local hospital and she was surprised that I was looking to have a further conversation with her. I fired off a considered response, copying in both the GOSH and local consultants, advising that whilst we had met with the local gastro team in June, we had heard absolutely nothing since and really needed some medical advice once September started, although somewhat ironically we have had our next GOSH appointment booked – September 2017! Thankfully the strong relationship we have built up with this dietician since M first went to GOSH 5 years ago meant that S was happy to step in and gave me a call just a few days into September. She was as concerned as I was about the lack of medical care being given to M at the moment and during that lengthy phone conversation, worked with me to put a plan into place for food trials over the next 4-6 weeks. She also offered to chase both Dr W and our GOSH consultant to find out what was happening regarding the transfer of M’s care and try and speed up the process to ensure that M is seen before November if at all possible. I’m not quite sure what strings she pulled, but within a week of speaking to S, Mike received a phone-call from Dr W to tell him that a plan had been agreed between the two hospitals and an appointment would soon be forthcoming. Delighted to hear that a plan would soon be put in place, Mike asked whether we could be privy to the discussion they had had, so that we too were on board with whatever next steps they were expecting to make. Another lengthy conversation later and at long last, we finally had some idea of how M’s care will be handled until the end of the year at least.

greg-house-is-a-never-ending-pit-of-wisdom-20-photos-5

The most critical aspect of looking after M right now is that no-one really understands what is going on with his body, his bowels and gut in particular, and there doesn’t appear to be any logical explanation why we seem to be stuck at just 5 safe foods. Add to that the added complications of the massive downturn in his health that happened as a result of his broken leg and the resulting failure to find ourselves in as good a position as we were a year ago, the medics all agree that they are more than a little stumped. So, rather than rush into more tests or a radically changed approach to his treatment, our local gastro team have booked monthly appointments for the next 3 months, where they will be assessing and observing him without getting too involved in the medical decisions. Obviously any problems that we do encounter during that time will be addressed, they won’t leave M to suffer unnecessarily, but they are leaving us to work with GOSH in terms of his food challenges and medicine tweaks. They have also recognised the need for psychological support, not just for M, but for the whole family and are proposing that we start with weekly appointments, split into fortnightly appointments for M and the alternate weeks for Mike and me. We have long argued that the diagnosis of his EGID has a huge psychological and emotional impact on M and have frequently seen the outpouring of that in the home environment. The added stress of his SATs this year is already showing at both home and at school and so I am hopeful that with these regular sessions in place and the support of us and his teacher, we will ensure he makes his way through Year 6 relatively unscathed. With this kind of all-encompassing care in place and the availability of local support for any admissions or longer term treatment changes that might be needed, the strain on the family will hopefully be reduced a little too, although it will obviously never fully disappear. We don’t know what the future holds for M and that is the most daunting thing we have to face as a family. What is encouraging is that there is already an open dialogue between some of the many people involved in M’s day-to-day care and our hope is that can only prove to be the best thing for him.

The many faces of friendship

Good friends have become a valuable commodity for our family over the years, something I have written about before and no doubt will write about again, but a few events over the last couple of months have made me realise yet again just how important these friendships are to us. In each case, the thoughtfulness of those friends turned what could easily have been difficult experiences into ones that were a little less stressful, something I always appreciate, but most of all at the moment as we deal with new school years, new medical teams and new jobs. Some of these are old friends, people I’ve known since my own school days who still play an important role in our lives, whilst others are those we’ve got to know as G and M build their own relationships with their classmates, but it doesn’t matter how long we’ve known them, they’ve been there to make a difference when it mattered.developing-friendship-machines-working-word-building-up-concept-construction-black-alphabetic-letters-forming-isolated-31326540

The first event was one of the most stressful I’ve had in a long time and even with this wonderful friend stepping in to help out, it was an experience I would have much preferred to do without. My Mum was away enjoying the wonders of Russia, Mike’s parents had flown home to Canada and Mike was back at his work, which is over an hour away from home even when the trains are running in his favour. For once I hadn’t left leaving work to pick up the children from school to the last possible minute and everything seemed to be under control, so naturally that was the point when everything suddenly went horribly wrong. My car wouldn’t start. Not only would it not start, but even with the engine turned off, the electrics seemed to have a mind of their own and the ignition refused to release my key. Even on the best of days this wouldn’t have been a good thing, but poor G had already had to disappear to the school library for an extra hour after school and I was now left with the dilemma of how to get home and get both kids without a car. Thank goodness for a good friend in our village, in the shape of the Mum of one of G’s friends, who kindly agreed to pick up M from his school, send her daughter to rescue G from their school and hold on to them both until either Mike or I was able to take them home. Her calm acceptance of the situation worked wonders on my frazzled nerves – I had by this point already phoned Mike in tears to tell him that not only had my car broken down, but that I was close to breaking down too – and reassured me that there was no need to panic as all I needed to do was get myself safely home. A couple of hours later I’d been rescued by our local garage and I rescued this friend from having to put up with my excitable duo for too much longer. It probably didn’t seem like much to her, I know it’s something I’ve more than willingly done for other Mums in the past, but it really did make a car-wont-start-186299740-e1431698432132bad situation a whole lot better and helped dampen my panic down to just concerns about how exactly we would manage without a car at all, given we’ve become a 1 car family over the last 6 months (and yes, I can be something of a “glass half empty” person at times and this was definitely one of them). Fortunately, the problem was nothing more than a flat battery and within 24 hours, it had been replaced and normal service had been resumed.

Fast forward a few days to when one of M’s friends brought a smile to his face with a small gesture that made the world of difference to my currently very sensitive lad. As I’ve mentioned recently, M has a well-stocked swap box in the classroom to ensure that he never has to miss out when his classmates bring sweets or treats into school to celebrate their birthdays. M has
become accustomed to swapping out the sweets for a non-edible treat of his choice, but I know that he misses the days when he used to be able to join in just like his friends and could eat a far wider range of foods. He had already brought home a number of Hero Attack trading cards for other birthdays, but I was met at the gate last week by a small boy hqdefaultwith the biggest smile on his face. This good friend and his thoughtful Mum had remembered that M can safely eat Foxes Glacier mints and so had taken a handful of those in for M, whilst the rest of the class enjoyed another brand of sweets. M was thrilled about being treated just like everyone else, his teacher was pleasantly surprised by this thoughtfulness and I was touched by this small step to include him in the thrill of the celebration.

Finally, we come to a recent Sunday afternoon spent with old friends and their family enjoying the chance to chat, play and share a meal. This is a friendship that has lasted over 25 years and which made them an obvious choice when we were choosing G’s godparents nearly 13 years ago. We arrived early afternoon allowing the children plenty of time to hang out and play together, whilst the adults enjoyed some much-needed catching up of their own. We talked about recent job changes, secondary school decisions and summer holidays as well as the ongoing saga of M’s health and hospital care; and before we knew it, dinner time had arrived. To our surprise, and M’s absolute delight, this wonderful couple had decided to cook a dinner that was completely M-friendly for us all and so we sat down to enjoy chicken kebabs, chicken goujons, rice, cucumber and some delicious applesauce together. friends-meal-jpgM felt a part of the proceedings in a way that was fantastic to see and when pudding arrived on the table – a safe baked rice pudding with more lashings of the applesauce – he was beyond ecstatic. That simple show of solidarity with our boy was amazing to see and whilst they didn’t think twice about doing it, was a thoughtful gesture that made an impact on us all. M didn’t feel that he was missing out on anything the others was eating and it perhaps gave them a small insight into what he lives with everyday.

As you can see, friendship has many faces and each of them, in their own particular way, makes a difference. I don’t think any one of those individuals thought they were doing anything out of the ordinary or extreme, but without those gestures our life would be far more challenging and a lot less fulfilling and colourful than it is.

Giving young people a voice

ypfI mentioned a couple of months ago that G has been invited to become part of the GOSH Young People’s Forum, or YPF as it’s more readily known. When I wrote that post, she was just about to attend her first meeting and was excited to see what the YPF was all about. For those of you who perhaps can’t quite remember the finer details, it’s a group of approximately 40 young people aged between 11-25, who are all either current patients at GOSH, previous GOSH patients or siblings of patients. As well as being one of the youngest in the group, G is, I believe, unique in that she is the only member who is the sibling of an existing GOSH patient, which makes her comments valuable coming, as they do, from a completely different viewpoint.

The purpose of the YPF is to improve the services provided by GOSH to their young patients, whether inpatients or outpatients and focusing on the teenage patients in particular. It is very much a two-way process, with the hospital asking for input on important issues or developments that are happening on-site as well as the YPF members developing their own projects to improve the experiences of patients and their families. man-speaker-1Members get involved in all aspects of hospital life from inspections such as the PLACE assessment and providing valuable feedback on projects planned by hospital staff, to writing content for the TeenGOSH community webpages and helping design areas of the hospital such as the reception area, which was redeveloped in 2014. You can read more about what the YPF members have been up to through their blog here.

The Forum meets 6 times a year at the hospital and each meeting lasts for the full day, with lunch and snacks provided by the GOSH catering team. They have been brilliant at providing safe food for G, although there are still a few glitches to iron out such as making sure her lunch arrives at the same time as everyone else’s. The 2 meetings that G has attended so far have been extremely different, but overall her experience has been good and she’s keen to continue her involvement with the YPF for the time being. At her most recent meeting – the minutes of which you can find here – they really did cover a whole range of different aspects of hospital life. G has now become something of an expert on the subject of the recruitment process and was able to share what they had been told about the different areas that needed to be covered when GOSH is looking to recruit new members of staff. A professional photographer went along to take photos for the new publicity campaign to raise awareness of the YPF and its role within the hospital and G is looking forward to seeing which photos are chosen for the final published materials. They were also lucky enough to go on a couple of tours of some little known areas of GOSH, including the various sacred places that provide spiritual support for those families from a number of your-halloween-party-2014-in-paris-sizel-161421-649-420different religions and a sneak peek at the Morgan Stanley Garden that was displayed at the Royal Chelsea Flower Show earlier this year. The particular highlight for G was the discussions held around arrangements for the teenage attendees of this year’s Halloween and Christmas parties and she had great fun inventing gory names for the food on offer at Halloween.

Cheese and Onion Skin flakes anyone?

Summer Bakes

tumblr_static_wendy2The first 3 weeks of the summer holidays were filled with clubs and camps and activities and I needed to create some M-friendly bakes that could be packed into a lunch-box or, in the case of
Over The Wall, included as a bedtime snack to share during the evening cabin chat session with the rest of his team. With M’s tally of safe foods still stuck at 5, I wanted to bake something new, something we hadn’t tried before, and where better to start than a quick search using my trusty internet search engine. There are not many recipes out there that incorporate those safe ingredients only, so I looked for some vegan and gluten-free suggestions and decided to do the rest of the tweaking myself where necessary.

The first recipe I found was for Pear blondies, a vanilla version of the ever-popular chocolate brownie without, rather obviously, the chocolate and I was intrigued to see if this could be made for M. Using apple purée as my egg replacer, I stirred my mix and then kept my fingers crossed as the small cakes went into the oven. The smell as they baked was amazing and, as always, a certain young gentleman appeared alongside me as I pulled the final product out, ready to cool. The quantity was enough to make a dozen bitesize blondies, which were perfect as a snack during his busy days. Both children enjoyed the blondies, with IMG_0762[1]M particularly keen on the small chunks of pear that had become melt-in-the-mouth and golden as they baked in the sponge mix.

My second new baking venture were Pear and Ginger cookies, which seemed to me to be a perfect combination of sweet and spice, something I was sure M would love. This was another easy recipe to whip up, made from the staples stored in my kitchen cupboards. The dough made an impressive 18 cookies and within minutes of them hitting my cooling rack, my hopeful duo found something important to do in the kitchen in the hope they might be successful in picking up a stray biscuit as they passed. However, whilst they were tempted to taste one straight from the oven, the lure of the lemon icing to be drizzled when the cookies were finally cooled was enough to gain me around 20 minutes extra before my store started to be depleted. These were an amazingly good bake as the rice flour didn’t make the cookies taste granular at all and the ginger was subtle enough to give a little extra heat without overpowering the sweetness of the pear. The children were both big fans of this bake too and I was intrigued to see which one M would settle on as his final choice for taking to OTW camp. In the end, much as he loved both of these new treats, he decided the pear and ginger cookies would be his cabin chat snack of choice and the empty pot returning from camp was all the proof I needed that they had been a success.

Lost in Translation

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.

global-travel-destinations

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

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.

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.

IMG_0617[1]

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!

 

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.

IMG_3019

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

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.