Tag Archives: EGID

Awareness in Lockdown – 7Y2D COVID-19 Diaries Week 9

This week has been a focus for raising awareness for 2 causes close to our hearts: National Eosinophil Awareness Week (NEAW) and Mental Health Awareness Week (MHAW). It somehow feels apt that these two go hand-in-hand this week as we have so often experienced first-hand how closely linked life with EGID is with the mental health well-being of all in our family. This year that is even more important as so many of us are struggling with the changes that the coronavirus lockdown has brought with it and none more so than the young people in our household.

National Eosinophil Awareness Week: We have been very active in raising awareness about eosinophilic diseases for a number of years, but decided to start taking a step back from that last year. Eosinophilic Colitis (EC) was the initial diagnosis that we received for M all those years ago from his consultant at GOSH, but in recent times, the diagnosis criteria for this condition have faltered and existing diagnoses have been actively questioned by many within the medical community. These days conditions such as mast cell activation syndrome (MCAS) have been bandied about in relation to M, but ultimately the root cause of his health problems still remains a mystery to us all. As I’ve said so many times, having a name to put to his health issues has helped us all, even when very little is known about it, and I continue to use both his original diagnosis of EC and the newer one of MCAS when filling in paperwork or talking about M with other people.

Despite our own uncertainty about whether EGID is the correct diagnosis for M or not, I will always continue to encourage and support the fundraising and awareness-raising efforts of organisations seeking to research and understand this family of conditions more. Lockdown maybe stopping us doing anything active to raise awareness this week as we have in the past, but it’s good to be able to do my bit even from within the constraints of my own home.

Mental Health Awareness Week: Mental health well-being has been a buzz word in our household for a number of years and never has that been more important than now as we see the impact of 9 weeks in lockdown on us all. I’m a happy introvert, who enjoys spending time in my own company and so, in many ways, lockdown life is suiting me quite well. Regular contact with my work colleagues through Zoom and conference calls, webinars and online catch-ups with other friends is keeping me in touch with the outside world, which is especially important at a time when my T1D is keeping me at home.

However, I see a greater effect on Mike and the children and I think a lot of that is due to the changes to their daily routines. I am still working 9-5 every weekday, albeit from home and more often 8-7, but the 3 of them are going through a very different experience to me. Mike was furloughed from his job as a chartered surveyor on 1 April and for someone who is very used to being out and about as he values or surveys properties every day, the restriction of staying at home has been difficult. He is also much more of a social bug than I am, so not having daily face-to-face time with anyone other than the children and me has also taken its toll. However, that being said, the online capability to chat to family and friends across the world is something he has definitely embraced, even taking part in his regular whiskey-tasting evening via Zoom the other night!

As for the children, well G and M are almost a perfect reflection of Mike and me. G is comfortable entertaining herself and being in her own company, whereas M thrives on spending time with his peers as well as being constantly active and mentally challenged by them. Both have found lockdown difficult and we have worked, and continue to work, hard together to find the best outlet for their emotions as well as effective ways to meet their social needs. Chatting on WhatsApp or connecting via the PS4 has been a good solution and both are also having tutoring sessions via Zoom or MS Teams every week. This connection with people from outside of the family has been key to giving them something that is a very faint semblance of what they’re used to experiencing daily. Keeping them in a routine has also been important as Mike and I are very conscious that their return to school in September, after the best part of 6 months home-schooling, will exhaust them physically, mentally and emotionally from the minute they step through the school doors, if not before.

The buzzword for MHAW has been Kindness and considering what random acts of kindness you can do for others has been much encouraged. However, I think it’s key to remember that, whilst showing kindness to others in all situations is important, so is showing kindness to ourselves. We truly are living through extraordinary times and we shouldn’t feel guilty if we are not coping as well as we perhaps believe we should. Be that by taking some time to do something we love to do as an individual – bubble bath anyone? – or spending time relaxing with our family or even reaching out to a friend because we just need to talk, being kind to ourselves will improve our own well-being, which is something we all need right now.

14 years of wonderful chaos!

14 years ago today he arrived in our world in a whirlwind of absolute chaos; and, to be honest, we’ve spent most of the time since then embracing that chaos with him. I can’t remember a great deal about his arrival, both M and I were far too ill for me to even consider stockpiling memories to look back on in the years to come. Indeed, the first image I have of our premature son was from the polaroid photo that Mike eventually brought back from the NICU, a photo that I wish we still had, but have absolutely no idea what happened to it and I would guess it got lost in the chaotic few days that followed his birth.

14 years on and life with M is filled with what can only be described as wonderful chaos. He is growing into a kind-hearted, empathetic young man, who constantly surprises me with his deep thoughts and insightfulness at times, whilst filling many other moments with humour and frustration in equal parts.

Happy 14th birthday M – as your card said this morning, you are one of my favourite kids! Love you always xxx

The Power of Sunflowers

Nothing brightens up a gloomy day like a beautiful sunflower. Tall, majestic and reaching for the sun, its bright yellow colour is sure to cheer up even the darkest of moments. There really is just something intrinsically cheery about this flower to my mind; but did you know just how powerful sunflowers can be?

I am, of course, not talking about the flower itself, but rather the incredible Hidden Disabilities Sunflower scheme, launched in 2016 in response to a query from Gatwick Airport as to how to better its help to travellers passing through its doors and since adopted by numerous airports, supermarkets and other stores and businesses across the UK as well as slowly being recognised worldwide. The scheme uses bright green lanyards covered with sunflowers to indicate that the wearer has a hidden disability and therefore might need additional support, time or space to use that particular facility. All done in a subtle yet visible way.

We hadn’t engaged with the sunflower scheme previously, but given G’s recent challenges with panic attacks and anxiety as well as M’s ongoing health issues and his own anxieties when it comes to travelling with his medicines and foods, the time finally seemed right to give the sunflower lanyards a go during our Christmas trip to New York. I requested them through the Heathrow airport website and was delighted with how promptly they arrived with us with no hassle. They formed a part of the big reveal on Christmas day and both children were wonderfully willing to wear them as we travelled with G having to be reminded to remove hers once we reached our hotel in NYC.

The support given throughout the airport was fantastic and extremely thoughtfully and carefully given. The Virgin Atlantic staff at check-in approached Mike and I to see what additional help we might need, but didn’t ask questions in front of either G or M. Our journey through security was remarkably easy as the airport security staff opened a new lane for us to go through without comment and were then careful to minimise the examination of M’s medicines and the food that we were having to carry with us. I was impressed with just how well all the staff working at Heathrow appeared to have been trained and how they offered us help and support without making a fuss.

The only problem encountered was that M found the material of the lanyard uncomfortable to wear, complaining it irritated his neck, so instead I attached it to his backpack, which made it less easy to spot on a first glance. I’m sure that he will not be the only person who will struggle with this because of sensory issues and so was glad to be able to give some constructive feedback to what is otherwise a fantastic scheme. Our sunflowers were unquestionably powerful during our Boxing Day adventures and will no doubt be something we make use of again the next time we travel.

20 years of #mischiefandmagic

A lot can happen in 20 years.

In the years since our wedding in December 1999, our family has doubled in size and we’ve moved schools, houses and jobs at a rate that has to be seen to be believed. We’ve survived illness and loss within both our families and our friends, and continue to do so on a daily basis thanks to some long-term diagnoses that have oft-times caught us when we were least expecting them. Chronic illness has become a much bigger part of our lives that we could ever have imagined, but with that has also come some amazing friendships, connections and opportunities that we never even dreamed would happen and that, in many ways, I wouldn’t change for the world.

One such relationship that we have all absolutely come to value is the one with the charity, Over The Wall. They have been a phenomenal support to G and M since both first attended their camps in 2016 and are, in an almost unbelievable stroke of serendipity, also celebrating 20 years since they were first launched by UK businessman Joe Woods following in Paul Newman’s footsteps and the development of the Hole in the Wall Gang camps in Connecticut USA in the late 1980s.

So what are we doing to make this a year of note?

As far as our anniversary goes, I’m hoping that Mike and I might manage a night out somewhere special, though celebrating the week before Christmas can make that difficult as we negotiate the huge numbers of office Christmas parties that we inevitably encounter when trying to book a table anywhere without a lot of forward planning.

And, of course, it will come as no surprise that we are also working hard to raise awareness and funds to support Over The Wall’s ambitious plans to take a record-breaking 1,000 children to camp this year. Mike started the year in style with a sponsored polar dip on New Year’s Day and we’ve turned our hands to a few other things – some old, some new – to see just how much we can raise. We followed the “sparking joy” fashion and adopted a Marie Kondo approach to clearing out our wardrobes, committed to giving a regular amount each month and even stood in the entrance of our local Tesco superstore a couple of weeks ago to collect what we could and spread the word about the camps too.

We’ve taken OTW with us wherever we’ve travelled, sporting branded t-shirts, hoodies and bandanas with aplomb and almost quite literally went “over the wall” with them during our visit to Berlin.

G and M have obviously been a big part of many of our efforts, but are now launching an appeal of their own. Their yearning to do something truly spectacular has unfortunately been somewhat hampered by not yet being quite old enough to participate in the activity of their choice, but they have instead picked the next best option in their eyes and will be taking part in a sponsored indoor skydive at the end of this month.

How can you help?

Well, it goes without saying that any sponsorship you can give would be very gratefully received by G, M and OTW, especially if you can help them meet their fundraising target of £200 – scaled back somewhat from M’s original suggestion of £20,000 – by visiting their fundraising page here.

If you’re not able to donate, but live near a Tesco store in one of the following areas*, OTW is one of their Bags of Help Centenary Grants recipients until the end of August and by adding your blue token to their box, and encouraging friends, family and fellow shoppers to do the same, you will help them receive a significant grant that will be genuinely life-changing. Remember “Every Little Helps”, even if that’s by a blue token!

Finally, sharing the OTW message of #mischiefandmagic with friends and across your social media channels will not only help the charity reach even more of the estimated 50,000 children and young people living with serious health challenges across the UK, but sharing our fundraising page will hopefully bring even more cash donations pouring in to help them achieve their goals not only this year, but in the future too.

Thank you!

*OTW is currently starring in stores across: Perth & Kinross, Angus, Stirling, Fife, Clackmannanshire, South Ayrshire, East Ayrshire, Dumfries & Galloway, Scottish Borders, East Lothian, Midlothian, Somerset (inc Bristol), Wiltshire and Swindon.

Go Big or Go Home

June was definitely busy, but it didn’t really prepare me for the double whammy that hit as it was heading out the door and ushered July in in unbelievable style. Many of those who know me personally will have already seen this news and have stated the same thought in a multitude of ways, but I think my sister-in-law said it best what she commented “…M can’t go small, can he?..“!

It all started a few weeks ago when M came back into the house with 4 or 5 insect bites on either side of his waist. This is not an uncommon occurrence in our household as we are fortunate to live at the far end of a small village, right on the edge of farmland and during the summer months, M spends a lot of his free time running around our paddock, jumping on the trampoline and climbing trees. It sounds idyllic, doesn’t it? And, to be fair, it mostly is and the less perfect elements of insect bites and his reaction to cut grass are really small and insignificant in comparison. The bites were itchy and red, but nothing looked especially untoward or unusual, although 1 in particular on his right side appeared to have grown into a reasonably large welt thanks to his incessant scratching of it. I shrugged my shoulders, rubbed some cream on to it to relieve the irritation and promptly forgot all about it.

Fast forward 2 weeks or so and M was now complaining of a small lump on his ribs – the right-hand side once again – which was causing him pain and disturbing his sleep every time he rolled over onto it. After putting up with his incessant moaning, I finally capitulated and booked an appointment for him to see our GP to have it checked. I had spotted that that 1 bite was still in situ and now sporting a rather angry-looking red rash around it, so determined it worth getting that checked out whilst we were there too. Add in the fact that one of M’s classmates had been diagnosed with shingles the week before and I had yet one more thing swirling around the back of my head as something else to be mentioned as well.

As soon as M pulled up his shirt in the GP’s surgery, there was no doubt in my mind that we were going to be in for the long haul. As well as the suspect bite and small lump visible on his ribs, there was now a further red rash over his right ribs, which the GP didn’t hesitate to confirm as shingles with really nothing more than a cursory glance in its direction. He didn’t want to start M on anti-viral drugs straight away, but warned that if the rash spread, I’d need to get him back in as quickly as possible for a prescription – and 2 days later that’s exactly what I did. The small lump proved to be nothing more than an overactive and swollen lymph node likely to be the result of his body desperately fighting off the shingles infection and it was quickly dismissed.

However, it was the bite that really raised our Dr’s eyebrows and after a few probing questions from both him and me, I had a sneaking suspicion that I knew where we were headed with this rash. One week on, a 5-day course of anti-virals to treat his spreading shingles rashes and the third doctor’s appointment of the week, there was no question what was going on with M. The red rash circling his bite had become the most perfect bulls’eye rash and Lyme Disease was diagnosed instantly. Fortunately, we appear to have caught this condition early and we all have our fingers (and toes) tightly crossed hoping that the 3 weeks of strong antibiotics will stop the disease in its tracks and reduce the risk of ongoing problems from it.

We’ve been lucky. M is feeling more tired and achy than normal and has been heard grumbling that this double diagnosis hasn’t secured him any time of school. However, his indomitable spirit in the face of unquestionable challenges has shone through and he has determined that he was going to carry on as much as possible despite feeling truly under the weather. The shingles rashes are mostly gone and the impressive target rash of Lyme Disease is also fading as the antibiotics do their thing. There is no question that it all could have been an awful lot worse, but I do wish that M would start to listen when I say that there really is no need to take a “Go big or go home” attitude to life!

A pudding for every day

M’s restricted diet has come with a number of challenges over the years, not least of which is finding some delicious desserts for him to enjoy at the end of a meal. I have worked hard to adapt recipes or create new ones for him, but sometimes all this busy working Mum wants is to be able to pull a pudding out of the fridge and not have to do anything more than remove the lid and provide a spoon. One of the staples of my childhood for weekday desserts was fruit yoghurts and when M was small, he absolutely loved eating a yoghurt whenever he fancied it. G has always been less keen, although she definitely enjoys the odd soya pudding – especially the chocolate ones – on occasion.

So, I’m constantly on the look-out for an M-friendly alternative and you can imagine my delight when my hours of internet trawling uncovered the wonder that are Bio Organic Rice Desserts. Now sadly these puddings are incredibly difficult to source and I have spent a small fortune in shipping boxes of them to our house. However, the chocolate desserts have been a huge hit with Master M and those boxes definitely don’t last long unless a few are hidden away from his immediate view.

18 months ago I came across  La Crèmerie’ and their rice yoghurts at the Foodmatters Live Conference in London and last summer I eventually managed to convince M to give the yoghurts a try. We placed an order for both the plain and the vanilla flavours, but unfortunately  La Crèmerie was low on stock and we had to wait a little while for just the plain yoghurts to be delivered to our door. The rice yoghurt is delicious, although M wasn’t too keen on the plain flavour – I just wish that he’d had the opportunity to taste the vanilla ones as well. However, whilst they weren’t the biggest success we’ve ever seen, they did make a great addition to his smoothies and I was also able to use it to create a stewed apple and yoghurt pudding for him. Sadly, these are another more expensive option and perhaps not one for everyday, but they are a good dairy-free alternative and one I’d happily recommend.

Rocky Road

Over the last few months, I have been encouraging G and M to become more engaged with the treats they like to eat, in particular asking them to find, choose and make the goodies they want to eat themselves. Part of my reasoning was to make sure M has some safe desserts to include with his lunch at school as it’s so difficult to buy safe options for him, and part was to help them both develop the skills they need to cook safe food in the future. It has been a mixed success and as soon as their initial enthusiasm wore off, the number of biscuits and snacks they had similarly reduced to almost nothing. However, after a couple of busy weeks at work, I decided to seek solace in the baking process myself and chose to experiment with adapting a new recipe for them both to enjoy.

My starting point was a favourite treat of mine, which I thought I could adapt, but actually needed me to perfect another biscuit first before I could even attempt the final product. I love shortbread, especially at Christmas time and I thought that an M-friendly shortbread might be a great starting point and something G and M would both like on its own. Some quick online research and I found a great and simple shortbread recipe, which thanks to our recent successful introduction of Vitalite dairy-free margarine to M’s diet, only needed me to swap the flour to make it perfect for him. It didn’t take long to whip up the first batch and G and M were delighted to taste-test them for me.

With the success of the shortbread in my back pocket, it was time to turn my attention to my final goal – M-friendly Rocky road. This time I recruited G as my kitchen help and she enjoyed the tasks of chopping the Freedom mallows as well as smashing some of the shortbread into bitesize pieces too. Whilst the standard recipe calls for the inclusion of raisins or cherries in it, we haven’t yet introduced them into M’s diet and so instead used dried banana chips, which again had some attention from G and her trusty rolling-pin. Moo-free chocolate has proven to be another safe option for M and was the final ingredient needed for the recipe.

An hour or 2 in the fridge and the Rocky road was ready. It was another resounding success with G and M and they certainly enjoyed the week or so that followed as either shortbread or rocky road was included in their packed lunches every day. Even better, M was so taken with both recipes that it reignited his interest in doing some safe baking himself and he spent a Saturday afternoon making the shortbread and prepping everything for the rocky road before he had to head to bed. He even told me off for not having put my recipes onto my blog quick enough for him to find and follow – so here they are, ready for the next time my youngest ventures into the kitchen!

Pizza and Ballet

One of the Christmas presents we were treated to this year was family tickets to go and see Matthew Bourne’s “Swan Lake” at the Bristol Hippodrome. We have only been to a couple of ballets with the children over the years despite our love of the theatre and my Mum was keen for us to experience this unconventional retelling of this classic ballet. Of course, no family evening out can start without dinner out too and this time round, partly as we were later arriving in Bristol than we’d originally planned and partly because, well, why not, we decided to veer away from our known safe restaurants and look for somewhere new to try.

It’s always a challenge when eating out with G and M because of their dietary needs, but our decision over the last 18 months or so to relax M’s restrictions on high days and holidays in order to find a better quality of life and balance for him means that on occasions like this, we’re able to eat in places where we’re confident he can choose safe ingredients to make a tasty meal. We know that there are a number of restaurants near to Bristol Hippodrome from Pizza Express to Wagamama, so I made the suggestion that we wandered up Park Street to see what else might be available, with our end target being Pizza Express if nothing else seemed to suit.

About halfway up the hill, we stumbled across the marvellous Molto Buono restaurant and, spotting gluten-free pizza bases on the menu, decided to stop there and see how their food measured up to the children’s somewhat exacting standards. It didn’t take too long for G and M to decide what they wanted to eat and were delighted to discover that as well as gluten-free pizza bases, the restaurant also had vegan mozzarella available as a topping. Much to my surprise, G opted for the GF Marinara pizza – tomato sauce, olive oil and oregano – and M chose the GF Diavola – tomato, salami and vegan mozzarella. Mike joined them in trying one of handmade pizzas, whilst I settled on a pesto pasta. The dishes that arrived looked amazing and tasted even better with portion sizes that satisfied even the voracious appetite of the youngest member of our family. I wouldn’t hesitate recommending this restaurant – excellent food, prepared simply, served quickly and all at a great price.

Fully satisfied by our meal and with more than enough time to meander our way back towards the theatre, our evening had started in fine fashion. We all then sat enthralled for the next couple of hours as the story of Swan Lake unfolded before us. Matthew Bourne’s interpretation brings a more modern-day twist to the tale and replaces the well-known Dance of the Cygnets with an incredible male troupe of swans instead. The dancing was incredible and brought real inspiration to both G and M as they watched it in absolute awe, something that should never be under-estimated as M had expressed his concerns about watching a ballet – “…there are no words to explain what’s going on, so how do you know the story-line..?” before it even began.

I think we would all heartily recommend seeing this production, though it turns out that I’m something of a traditionalist when it comes to the setting, much preferring the classic portrayal of the Swan Lake tragic love story. It was fascinating to talk to G and M about their thoughts on the production, with M uncertain as to whether the second half was a dream or not and both expressing the view that the role of the Swan/Stranger represented the 2 sides oft he Prince’s psyche. This was a performance that really challenged everything we knew and expected of a ballet and was a truly amazing experience. Despite my hesitations about some parts of this version, I am fascinated to see how Matthew Bourne has adapted and updated other ballets and hope to be able to see another of his productions soon.

Birthday blessings

This weekend has been one of “those” weekends. You know, one of the ones where there’s so much to do and just not quite enough time to manage to do it all. A combination of birthday celebrations, performing arts classes, auditions and hospital appointments has left us feeling somewhat exhausted; but tonight, after a fun few hours with M, G and a group of their friends, I’m also counting our blessings.

It’s been no secret that M found last year, his first at secondary school, tough. The move into a school environment where his year group was considerably bigger than his entire junior school combined with family deaths and the inevitable challenge of his continued restricted diet left not only M, but all of us, struggling to find a positive way forward. Circumstances last year meant that we didn’t really do much to celebrate his 12th birthday, so I was determined to kick off his teen years in whatever fashion he wanted.

The celebrations started with an M-friendly pear and ginger cake with caramel buttercream icing on Friday evening to accompany his presents, which included the bass guitar and amp that he’s been yearning after for a few months. He had been slightly frustrated with Mike’s refusal to take him to look at guitars last weekend and was only marginally mollified by the promise to get up early this Saturday morning to visit our local guitar shop and examine exactly what was on offer. As you can imagine, his excitement in finding the guitar and its own mini amp waiting for him when he got home from Stagecoach was wonderful to see and we’ve been serenaded with renditions of both “Bohemian Rhapsody” and “Seven Nation Army” since late Friday night! I’m just glad the bass guitar lessons he’s been having at school appear to be paying off already and delighted to see him so wiling to practise in every spare moment.

However, the culmination of M’s birthday weekend came yesterday afternoon as we spent the late afternoon and early evening with a group of his and G’s friends. M had chosen a group of old friends and new, some from school, others that he’s grown up with and the best bit was seeing just how well these different strands of his life hit it off and enjoyed the few hours together. After lots of chat, M had decided he wanted to try his hand at an escape room and we booked 2 rooms at one of our local escape rooms sites. We amicably split into 2 teams, each with an adult and a mix of the older and younger children and determined to compete against the clock, rather than each other to escape our locked rooms.

I was impressed with how well they all worked together and certainly those on my team managed the frustration of solving some of the clues well, with only one of M’s friends needing some redirection and reminders to focus from time to time. We were lucky to escape with just 2 minutes to spare and although Mike and M’s team were not quite so successful – they had found all 4 keys, but failed to open the door in time – everyone enjoyed themselves and were ready to move on for a dinner to suit all dietary needs that were present.

The chatter, camaraderie and chuckles around the table were wonderful to experience and all the children were a delight to spend time with as they enjoyed their food and just spending time together. It was a wonderful way to celebrate M’s 13th birthday and I really have counted my blessings tonight that M has finally found his way out from the darkness of last year with the help of some amazing friends, who accept him for who he is and don’t see his health challenges as a barrier to their friendship with him. A perfect celebration with both new friends and old; and a combination of friendships that I hope will keep going for many years to come.

Young Carers Awareness Day 2019

Today is Young Carers Awareness Day 2019 and the purpose of the day is to raise public awareness of the challenges faced by young people because of their caring role, and to campaign for greater support for young carers and their needs. Young Carers often struggle with mental health problems of their own due to the strains they can find themselves under, hence the launch of their #CareForMeToo campaign.

I was recently invited to write a blog for Over The Wall about the impact of their camps on our family and I chose to particularly focus on the importance of the siblings camps for children like G, who is recognised as a Young Carer locally. I thought I’d take the opportunity to share my thoughts here too.

 “…when one person in the family has a chronic illness, the whole family has it…”

Jamie-Lynn Sigler

When you live with chronic illness you know that it is about so much more than just the disease itself. Pain, exhaustion, medicines, appointments and hospital admissions are often accompanied by a loss of self-confidence, doubts about self-worth and mental health issues that need time, patience and understanding to come to terms with and overcome. As parents to a child with a rare illness that is little known and little understood, Mike and I have had to find a resilience and strength within ourselves to not only support M as he finds his way to understanding his condition and living his life to the fullest, but also to fight those battles that he is not yet ready to tackle himself.

For the last 8 years, since our appointment with M’s first gastro consultant, our focus has been on finding answers and researching ways to give him the best quality of life we can despite the challenges he faces. As he now heads into his teens, we are seeing the fruits of those endeavours as M begins to make his own choices about the foods he eats, knowing full well the reactions he may experience, and taking on more responsibility for his medicines.

You could say that we’re achieving what we set out to do when we got his diagnosis: to raise a young man who won’t let his illness define or constrain him and who believes that he can be successful no matter what; but we have not been alone in supporting M. Family, friends and our local community have walked every step of this journey with us, helping us in more ways than we could ever imagine was possible; but there is one person who has been there since the very beginning, without any choice and yet who loves M unconditionally and is an indisputable rock for him, even when they don’t always see eye to eye.

She is, without a shadow of a doubt, the unsung hero in our family story.

Since the day her baby brother arrived prematurely in her world, G was determined to help out whenever she could. She put up with his incessant screams from what we now realise was undiagnosed pain and looked to comfort him however she could – making him laugh, giving cuddles, reading stories or just bringing him “Cat” when nothing else would do. Like so many siblings to children diagnosed with chronic illness, G has inevitably been side-lined when that illness has dominated family life and despite our determination to make sure she doesn’t miss out because of it, I know there are times when we haven’t got that balance right and given G the attention she deserves and needs.

From the interruption of frequent hospital appointments to badly timed admissions over her birthday 2 years in a row, G has had to take the back seat to M’s illness more times than seems fair and these are not the only ways in which her life has been affected by his diagnosis. We cannot ignore the reality that having a chronically ill sibling has had a massive impact on G and her mental health too. Anxiety, panic attacks, facing fears and anger management issues are all inextricably tied up with the role of being a young person caring for another and it has been crucial we find a supportive environment for her that has taught strategies for dealing with her yo-yoing emotions and provided a safe and understanding outlet for them. Encouraging G’s involvement with our local Young Carers group as well as applying for a place at the Over The Wall Siblings camps have been important steps in recognising the impact that M’s health has had on her over the last 15 years and have helped her feel that we really do understand and appreciate all that she has had to put up with and sometimes give up too.

That time away at OTW was a week for her to be herself, not defined or viewed in her role as M’s big sister and encouraged and allowed her to take time to focus on herself without worrying about him. G came home a different child to the one who had left us, having realised that her life experiences didn’t isolate her in those circumstances and she had found a sense of self-worth that she had been struggling to develop at home and at school. G’s second camp experience saw her develop a confidence and willingness to take on new challenges, knowing that, with a little bit of self-belief and perseverance, no mountain is too big for her to conquer. OTW brought G out from the shadow of M’s ill health, helped her rediscover who she is as an independent individual and gave her her childhood back – and for that I can’t thank them enough.