Tag Archives: OTW South Health Challenges Camp

#NEAW2018: D is for Donate

May 21: D is for Donate

There’s nothing I hate more than spotting a charity canvasser on the street and I’ll happily confess that I instantly become one of those individuals who speed up and drop my eyes down to avoid drawing too much attention to myself if I can help it. It’s not that I’m not prepared to donate to charity – oh how ironic this post would be if I was – but I am definitely not a fan of being pressured to sign up to an ongoing commitment to any one charity whilst out and about doing other things. Part of my problem is that I hate to say no to people and always end up feeling very disingenuous as well as guilty when I come up with a reason why I don’t want to set up a regular donation on the spot.

A cash donation can help, of course it can, but these days I don’t really know what charity to suggest when it comes specifically to making a financial contribution to support those diagnosed with EGID. There are no charities in the UK currently working on research into gastro conditions and few investing time and energy into supporting families living with the consequences of this challenging diagnosis. As long as gastrointestinal disease remains the “poor” cousin to so many other life-impacting conditions, there is little chance of much progress when it comes to finding ways to improve the day-to-day life of those living with it.

However, donation is about much more than just the money. Your time, your care and your support can make an incredible difference to a family living with chronic illness and the impact should never be underestimated. When someone takes 5 minutes to ask how M is doing, and, even more importantly, asking how G and the rest of the family are too, that effort is priceless. At the moment, we seem to be a state of status quo with M’s health which is fantastic, but there is also a sense of overwhelming ennui when it comes to our ongoing relationship with our local hospital and M’s gastro consultant. Taking the time to talk to me about life apart from M’s EGID makes a big difference and should never be seen as inconsequential. We teach M constantly that there is so much more to life than his illness and it’s important that we hold on to that truth and don’t get bogged down in the mundane.

There are, of course, a million and one charities who need financial support and it’s a challenge to choose the cause that’s not only closest to our hearts, but needs that money the most. This year we’re not actively fundraising as part of NEAW, mostly because I only changed jobs a month ago and haven’t found the time to be more organised, but thanks to M’s bold cheek, we have a small fundraiser planned for the end of June. Last year, he asked the founder of their Saturday dance school if this year’s end of year concert could be a fundraiser for the amazing Over The Wall charity and he and G are now working hard on their presentation to introduce the evening. M is thrilled to be attending an OTW Health Challenges camp again this summer and we continue to be extremely grateful for the care, support and opportunities they have given both children. Both OTW and my new role with our local air ambulance have shown me so clearly that whilst the money is important and enables both charities to continue doing their fantastic work, volunteering with them has equal value. At work our volunteers are an integral part of our workforce and the truth is, quite simply, that their daily contribution to the running of the charity cannot and should not ever be underestimated.

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#FFFA18: The Shortlist

It’s really only been a couple of weeks since I was a third-time judge at this year’s FFFA and the exciting news is that the shortlist for the Awards has already been published. I absolutely love scanning through the shortlist, even for those categories where I’ve been involved in the judging, because I find it so encouraging to discover a plethora of products, many of which I’ve never heard of before, which will make such a difference to those living with a variety of food allergies. As well as those I’ve already identified as particular highlights for me on the day, I was excited to see La Crèmerie’s rice yoghurt detailed on the Milk Product Alternatives list. I actually discovered this rice yoghurt during my visit to the Foodmatters Live conference back in November and whilst I have yet to try this with M, I know it’s something that could be a real game-changer for him and I’d love to see this do well in the overall Awards.

What has been even better for me this year than list after list of amazing foods, is the final named category: the FreeFrom Hero Award. Back in December I was asked if there was anyone I would like to nominate for this special category and it’s been really encouraging to us as a family to see our 2 nominees appear on the final shortlist. You can only imagine my delight this week as I received copies of the emails that have been sent to tell our very own heroes of their success. When you look at the list I’ve no doubt that you’ll immediately be able to identify one of the nominations I made, that of Steve Whitaker and Jason Conners, the cooks at Over The Wall. Ultimately I don’t know whether either of our suggestions will be the winners of the category, but I wanted to share my reasons for nominating this fantastic pair for special recognition at FFFA18:

Your reason for nominating them: M’s rare gastro condition, complex food allergies, restricted diet and associated problems has meant that he has never been able to stay away from home except with his Grandma. At nearly 12, he has never stayed away on a school camp or even had a sleepover with friends. In 2016, he was offered a place on the South Health Challenges Camp run by charity, Over The Wall, which meant he would be able to stay away from home for a week, fully looked after by an amazing group of volunteers who cheerfully give their time to support these children, who suffer with life-changing illnesses.

In preparation for the week, I spoke to OTW several times to discuss M’s dietary needs and at least 2 months before camp, I was sent a sample menu of the food that the chefs were planning to cook for him based on his extremely limited diet (just 5 foods plus 1 oil and sugar), which was truly amazing and that M loved the sound of. We touched base the week before camp to just check whether there were any changes and when we arrived at camp, the staff took time to meet with me to discuss all of his needs.

M ate like a king the entire week he was away and reluctantly told me that “Sorry Mummy, but their food was even better than yours!”. He was kept safe, had no allergic reactions because of their incredible awareness of the care that needed to be taken, was able to make friends with others facing similar health challenges, tried out so many experiences he’d never been able to have before and just felt like a child as his health problems firmly took a back seat to the more important job of him just having fun. As Mum, I felt confident that they knew what they needed to do to support him and have subsequently seen just how amazing their care can be when they called whilst G was away on sibling camp because they were concerned that she wasn’t eating the GF/DF food they were preparing for her.

We are hoping that he will be able to go to OTW camp again this year, but are just so grateful that he even had that opportunity to experience it once. These chefs (and all staff to be honest!) really deserve recognition for making M’s first experience of being away from home such a positive one.

The results will be announced on Twitter, on the evening of April 17th (@FFFoodAwards) and I’m hoping that we might once again be able to be there to recognise the hard work and incredible dedication of all those shortlisted finalists as well as celebrating the success stories of the worthy winners.

Charity Cut

Whenever I write my blog, I am always conscious of not wanting to focus on any one emotion more than another, particularly when life seems pretty bleak to us. Yes, sometimes things feel overwhelming, but I know that in the grand scale of things life could be so much worse and I’m truly grateful that it isn’t. However, this is one occasion when I’m not going to apologise for shouting from the rooftops about just how fantastic both my children are in my eyes. They’ve both had brilliant end of year school reports and Stagecoach reports, which is a real testament to how hard they’ve worked this year, but this post is about something so much more than that and something of which Mike and I are incredibly proud.

In May, as part of National Eosinophil Awareness Week, M wrote to his Headteacher to ask if he could hold a “Dress as your Hero” day at school. Unbeknownst to me, M was invited to speak at one of the whole school assemblies about why he was running this fundraiser and took this opportunity completely in his stride. Both his class teacher and the Head have told me that he spoke confidently and with great articulation, able to clearly explain who Over The Wall are, what they do and the importance of these camps to him and to G. The school responded in amazing fashion and M’s hopes of raising around £100 proved to be a woeful underestimate of the final total.

Back at the start of the year, I wrote about our family’s New Year Resolutions  and mentioned that G had set herself a resolution that would be revealed in the fullness of time. It’s a real privilege to now share that resolution with you all. My gorgeous girlie decided that she wanted to cut her beautiful long hair before we travel abroad this summer and was keen to do it for charity if at all possible. So, for the past 7 months as G has been growing her hair as long as she could get it, she has been researching just how she could support a charity by doing so.

Two weeks ago, G faced her charity cut and had over 10 inches cut off to benefit 2 amazing charities. The 10-inch plait has been sent to the Little Princess Trust, who will use it to make real hair wigs for children across the UK who have lost their hair due to intensive medical treatments. Not content to leave it at that, G decided to join M in his fundraising efforts for OTW and asked family and friends for any sponsorship they were willing to give her to support her in her efforts. Regardless of any lingering nerves or uncertainties, G was excited to see her final look and I’ll be honest enough to say that we now have a teenage daughter that looks stunning and even more grown up than she did before. She really is rocking her new style:

Working together with this shared purpose, G and M have succeeded in raising more than a phenomenal £760  for Over The Wall, the charity that provides free camps for children with serious health challenges, their siblings and their families. As you’ll have read more than once on here, G and M have both benefited hugely from attending the Over The Wall camps and as a family we have chosen to support the work of this charity in every way we can. This really is a proud Mummy moment for me, seeing G and M be determined to raise awareness and financial support so that OTW can keep creating the magic they do every day at camp.

We are, of course, more than happy to keep collecting for this fantastic cause and you can add to the hard work of both children over the last couple of months by donating via our Virgin Giving website here. Thank you

Bitter disappointment

Two years ago, M and I waved goodbye to G as she trekked off on the adventure that is Year 6 Camp and, as he had his NG-tube in place, we chatted about whether Year 6 camp was a possibility for him. I reassured him that Mike and I were both keen for him to go and would work hard with the school to ensure that his every need – medical, dietary or otherwise – was met as he needed, whether the feeding tube was still in place or not. Despite never having spent a night away from family, M wanted to go, to try out new activities and to challenge himself as opportunity offered.

One year ago, as I manoeuvred M’s wheelchair through the back gates of school and across the school field to his classroom, we breathed a sigh of relief that it was during Year 5 that he had spectacularly broken his left leg and not in the weeks leading up to the Year 6 camp. The slow reintroduction of foods following the removal of his feeding tube would not hold him back and once again I found myself reassuring him that, if needs be, I would bake a batch of M-friendly cakes or cookies to accompany him on the trip and that we would ensure that the camp kitchen could safely cater for whatever his food requirements were when he went. His week away at Over The Wall built his self-confidence as he realised that he could tackle anything he put his mind to and succeed.

For the last 2 years, M has been looking forward to this rite of passage, this week of school camp and practically counting down the days until it was finally his time to go. He has been in discussion with G about the different activities he might get to do and planning all that he would need to make the week the success he so desperately wanted it to be. I met with the school to talk over the arrangements for meal-times and sleep that would need to be in place and was confident that they would do everything in their power to make it a week to remember for him and all his class-mates.

And then 2 weeks ago, M had to make what has been, without a doubt, one of the hardest decisions in his life so far. The past 4 months of food challenges have taken their toll and when that was added to the stresses of SATS, we saw an unwelcome decline in his health that we weren’t sure could be overcome easily. Despite our best efforts and hard work since mid-May, M has decided that going away to Year 6 camp is not the right thing for him to do at the moment. To say that my boy is bitterly disappointed would be an understatement. For 2 years of longing and planning to come to nothing is heartbreaking for us all and has been a bitter pill to swallow. For M, life has just seemed incredibly unfair once again.

M is frustrated that he can’t go, but he has based his decisions on the health struggles he is currently facing and knows that ultimately it is the right choice for him. He has tried to remain cheerful in school and has been an active participant in the tasks set to his class as they have researched where they’re going and what they’ll be doing. Mike and I met with his teachers and arranged for Mike to take him to the camp today for a half-day*, so that he can join in an activity of his choice and not feel that he is missing out completely. What has made it even harder to bear is that he currently doesn’t have a place on this year’s OTW Health Challenges Camp and is instead on the waiting list, with his fingers tightly crossed that a place might become unexpectedly available.

I know that in the long-run, M will pick himself up and dust himself off and keep going, just as he always does, but it’s hard to comfort him when he’s railing against just how unfair life can be because, in all honesty, right now I agree with him and it’s hard to find the positive and that silver lining we so desperately need to cling to.

*I’m delighted to share that today’s morning has turned into a full day at camp with his friends. M enjoyed the mud assault course so much that he felt confident to stay on and try his hand at abseiling and anything else he could find the time to do.

NEAW 2017 – Shared Experience

If there’s one thing the last few years have taught me, it’s that it is truly worth reaching out and sharing the story of our experiences, as it is thanks to those who have had the courage to share their stories with us that we have found the strength and courage to persevere and carry on, even when the hardest of decisions have had to be made. Talking about the challenges that have faced us, sometimes on a daily basis, is unquestionably therapeutic and can often be a self-centred process, but I’ve learned that sometimes, when I’m speaking about a moment that represents only a small part of a much larger picture for us, that is the thing that speaks most into the heart of a matter that is a seemingly insurmountable one for another family. I’m grateful for those who have taken the time over the life of my blog to get in touch and let me know that a post I’ve written has sometimes made what is, for them, a big difference at that time in their life.

Today is the start of National Eosinophil Awareness Week 2017 (#NEAW2017), our fifth year of finding new ways to talk about EGID and telling those in our community, and beyond, about this disease. Last year, we went all out with our approach to raising awareness and raising funds for the charity, Over The Wall: I appeared for the third year in a row on our local BBC radio station, talking about life with M and with EGID, and our local paper also ran another story highlighting what we were trying to do. We attended some community summer fairs to hand out leaflets about EGID as well as running some mini carnival games to boost our fundraising total. M took some of those games into his school and shared in assembly the short film that he and G had created to explore the impact of EGID from his point of view. Likewise, G’s secondary school offered their support and ran a Year 7 non-uniform day and asked every tutor group to show their film. We extended our fundraising efforts past the third week of May and, with the help of our regional theatre who kindly agreed to have collection buckets available for 2 weeks at the end of each performance, we managed with the help of the wider community to collect more than a staggering £1,000, which I not only know will have been put to good use, but have seen in the fantastic OTW South Siblings Camp that G attended for the second time just a few weeks ago.

This year we’re taking things a little easier, though I’m still planning to write a blog post a day for the week and as a family we’re once again taking on the challenge to “Eat like M” for the duration. Our week starts with another radio appearance, with this year marking the debut appearance of M, and G if she deigns to give more than her usual, teenage monosyllabic answers on air. I am filled with some slight trepidation as to what might come out of their mouths as they speak live during the programme, but I’m looking forward to hearing what they both choose to share about life with EGID. As M’s career at his incredible Junior school draws to an end, the Headteacher has agreed to support our awareness-raising campaign for the final time and is helping M to host “Dress as your Hero/SuperHero” for the day on Friday May 19th.

We have also asked for donations of any unwanted fancy dress costumes to send to Over The Wall as part of their appeal this year. They are looking to replace as much of their existing stock as possible for camp and whilst they are grateful for any and all that they receive, they are particularly looking for costumes to fit teenagers and adults. If you have some lying around your house and want to help support this amazing charity, you can find the Head Office address to send those costumes to here. All in all, I have no doubt it will be another busy week, but hopefully a good one too and of course, you can all do your part to help us by sharing my blog posts wherever you can to reach out to your community and share our EGID experiences.

This year we have decided to continue our support of the amazing charity, Over The Wall and their camps. If you’re able to donate even a very small amount, please follow this link to my Virgin Money Giving Page where your donation will help more children living with chronic illness like G and M by giving them and their families a chance to enjoy some much-needed time away from it all.

Beating the Blues

Today is Blue Monday, the day predicted to be the gloomiest day of the year due to bad weather, the stark reality of our Christmas over-indulgence now affecting our dwindling bank accounts, the post-Christmas buzz that has completely disappeared from the horizon and our well-meant resolutions that are proving far harder to keep than we ever imagined. There are some New Year resolutions that you know will be difficult to keep beyond the first few days – abstinence springs instantly to mind – and then there are those that will never, could never be a challenge, but rather are an absolute pleasure to complete. Last year gave our family 2 amazing opportunities, experiences that were so life-changing, so extraordinary for both children and so liberating for us all that I knew that one resolution that I would not fail to meet was to write a post to not only recapture what are amongst my most favourite memories of 2016, but to also encourage others to get involved with what is a truly inspirational organisation.

9a78a65173e2885ea3a8c8b9d3ccd1acThanks to the amazing charity, Over The Wall, last year both G and M were able to escape from the reality that is their life at home coping with chronic illness and find a world where nothing could hold them back or stop them from achieving what might have previously seemed to have been impossible. G discovered a group of friends who could understand completely what life can be like when you have a sibling with serious health issues, but who got to know the unique, kind-hearted, gentle-spirited and passionate girl she can be in her own right and not simply as “M’s big sister“. Her confidence grew as she responded to the love, focus and encouragement that was given to her throughout her week away and she found a new and irreplaceable identity as a valuable member of last year’s Purple Girls at the South Siblings camp. Likewise, just a few months later, M was able to experience, for the first time ever, a week away from family, where he got to be as carefree a child as his school-mates are and could try out a whole host of new activities, confident and safe in the knowledge that his medical needs were being well-managed by the volunteer team surrounding him and he just needed to concentrate on having fun. Their time away from home taught them both that there is more to them than EGID and food allergies: Over The Wall truly gave my children wings to help them soar.

So, why write once again about the extraordinary adventure that is Over The Wall? Well, with a New Year comes new opportunities and you don’t have to have a child living with a chronic illness to be able to become involved with this organisation:

  • Application forms are currently open for places on the 2017 camps and be it the Siblings, Health Challenges or Family camp that meets your needs, now is the time to register your interest and find out if you can secure a place. Both children are glad to know that their forms have been completed and sent off, and it’s just a case of waiting to see if they’re back to the camp bubble this year
  • These camps depend heavily on the huge amount of time given to them by their team of dedicated volunteers. If you’re interested in volunteering your time and helping make a difference to young people impacted by health problems, volunteer applications are also now open. The medical team who willingly give their time are unquestionably invaluable, but whatever your skills, know that your presence will undoubtedly make a difference to the children that are there
  • OTW offer these camps free to those families who attend and to be able to keep doing what they do and successfully reach out to even more young people, they need your help in raising funds. As a family we decided to focus our fundraising efforts last year on OTW and will continue to do so for 2017. Thank you so much if you helped us make a difference in 2016. Cake sales, sky-diving, shaving your head or running a marathon – whatever your interest, please consider supporting this charity by raising sponsorship or making a donation

And just in case you needed a reason to support and spread the news about Over The Wall, here’s a few photos that capture the magic that transformed the lives of G and M in unimaginable ways in 2016.

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.