Tag Archives: OTW South Health Challenges Camp

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.