It’s no secret that I absolutely love listening to our local radio station. It’s a great opportunity to hear about local people and stories as well as the national and international news. Sometimes I’m lucky enough to hear a friend or acquaintance being interviewed and I’ve even been on the radio 4 times speaking about M, G and the impact that his EGID diagnosis and restricted diet have had on our family. One of my favourite times to listen is in the morning, when the regular presenter hosts his phone-in on a wide variety of subjects from the sublime to the ridiculous and it was this morning’s topic that triggered my thoughts for today.
Today is World Children’s Day, a day to focus on children and more specifically, according to the UN, “To recommit to putting children first. For every child, every right: the right to be a child, the right to play and the right to be safe.”
And this made me think.
It brought to mind an event that Mike and I attended in London last week, the annual gala dinner for the SeriousFun Network, the global family of camps for children with serious health challenges, their siblings and families. We were there to support Over The Wall, the charity that runs the incredible UK-based camps that both G and M have been fortunate to attend over the last few years. Those camps work hard to help those children who go to feel “normal”, often for the first time in their lives and to realise that they are not as isolated in their experiences as they so often can feel, whether as the child living with the chronic illness or as their sibling.
I’ve spoken so many times about the impact that OTW has had on both G and M since the first time they went and those effects are long-lasting. Friendships have grown with those they’ve met at camp and for G in particular, those same people have become her tribe. Time and distance has made no difference to those connections they’ve built and each camp sees them re-establishing their friendships from where they left off in years before.
The gala dinner was a great opportunity to celebrate the work that the SeriousFun Network camps do across the world. Much to Mike’s delight we were seated, purely by chance, with a group of Canadians connected to OTW through their corporate giving and they managed to spend half the evening talking all things ice hockey with great enthusiasm. It is thanks to individuals, groups and companies like these that OTW have managed to increase the number of campers they take each year and, having broken their target of 1,000 campers this year, have now got ambitions to reach 1,200 children in 2020. We were entertained by a variety of great acts including 2019 Britain’s Got Talent winners, Twist and Pulse, singers and musicians Damien Rice, Charlie Siem and Diane Birch and comedian 
Steve Coogan as well as a few of the SeriousFun campers who have performed at Stage Night at their respective camps.
It was a lovely evening, spent with people who all have the same goal to support and bring a touch of the usual to the lives of children who are anything but. We feel privileged that since 2016 our children have benefitted so much from the extraordinary efforts of the surprisingly small handful of staff members and the huge army of volunteers working for Over The Wall. In a reality where M’s health challenges have been an unwelcome, yet prevalent feature, it can never be underestimated just how much of a difference OTW has made to both G and M, and Mike and I are already planning to join the party again next year.
This truly is an organisation that has committed to putting children first and focuses on that right of each child to be a child, no matter what else life has thrown at them.
We found a variety of small items to pick up for future occasions, well Christmas is fast-approaching after all, but the out-and-out winner for the day has to be the amazing “
Having bought a kit and brought it home with us after the indoor sky-diving adventures, it was a case of waiting for the perfect opportunity to give the recipe a whirl and just a couple of weeks later, we decided on a curry for our Saturday night family dinner. M read through the ingredients listed on the inside of the pack, made a note of anything we needed to buy to make it and then helped prep and cook the meal itself. A delicious meal was prepared and served to our discerning family audience. M, Mike and I all very much enjoyed the flavours of the curry and whilst G was far more reluctant to give it a glowing review, she did manage to finish her plate,eventually!
Wednesday: An early start to drop Mike’s car off for its service before we headed to 
Thursday: A mixed day today. Halloween is always difficult for me because it’s the anniversary of losing 
Farmhouse Bar & Grill: As we knew we’d be arriving late on the Friday night, we booked our first meal out for the Saturday evening and chose the Farmhouse Grill, which seemed to have a good selection of meal choices for even the pickiest members of our party. G opted for the baked goats’ cheese salad with blueberries, cherries and a mix of toasted nuts as well as a side of chips, which we were assured were cooked in a separate fryer to make sure they were safe. She enjoyed the meal, although learned the important lesson that it’s always worth asking for the dressing to be put on the side as the strong balsamic vinegar dressing was a little too much for her taste-buds. M decided that a gammon steak with pineapple and chips was the perfect dinner and loved every mouthful he managed, although the generous portion was a little too big even for my hungriest child. There were no safe desserts for them on the menu, but with more than enough birthday cake to eat, the puddings weren’t missed at all.
Knights Tafarn: For our Sunday lunch, albeit it a late one due to a morning spent enjoying the slides and lazy river at the Blue Lagoon Water park, I suggested the Knights Tafarn, the on-site “local” pub. We were lucky to find the restaurant fairly quiet by the time we were ready to order and it had no problem in catering for the 7 of us in good time. Having chosen something a little more unusual *for her* on Saturday night, G stuck to an old, but familiar favourite of ham, eggs and chips. Once again we were reassured that the chips were safe and she certainly enjoyed every single mouthful. M, on the other hand, decided he wanted to have a slightly lighter lunch of gluten-free ham sandwiches with a small salad and a side of chips. I say small, but afraid that it wouldn’t be enough to satisfy M’s almost insatiable appetite at the moment, Mike had actually ordered a double portion of sandwiches and so we ended up with a few leftovers. The food was good, although not remarkable, but it was simply great to be able to eat out for a Sunday lunch with our extended family.
All in all, I was impressed with the food offerings at Bluestone. We didn’t have time to try the Oaktree Italian restaurant, although I had spotted that they had GF pizzas on the menu. The small convenience shop stocked an adequate supply of freefrom foods in case needed and I was impressed to see an array of safe breads, biscuits, cakes, pasta and chocolate for sale as well as the increasingly popular vegan Magnum ice-creams. The selection was small, but good and I loved that they had a number of local suppliers available as well as the bigger name brands.
Easy; my Mum’s milestone birthday – her 70th – and a family weekend spent celebrating in style at the fantastic 
With 7 of us visiting, we stayed in one of their Grassholm lodges, which slept us all more than comfortably and included a fantastic open plan downstairs space with a generous sitting room, dining area and kitchen. Those of us who could booked bikes for the weekend and G and M had a great time racing around from venue to venue for each of the activities, although some of the hills proved a little more challenging for the rest of us. Over the last year, both children have really enjoyed every opportunity to go on bike rides especially as M’s confidence in his bike-riding has grown, and we can often be found spending a couple of hours exploring the country lanes near our house as part of a family ride. It’s also possible to hire a golf buggy to drive around the site, but we spent much of our time either walking or on our bikes whenever possible.
Needless to say, the children and Mike selected their activities for the Saturday with relative ease and I spent my time trying to grab action shots as G climbed to the top of a 40+ foot tree, whilst M and Mike took on the challenge of the high ropes course. Add in the demonstration of their Canadian roots in the afternoon with some axe-throwing skills and great fun was had by all. We even managed to squeeze in a quick early evening swim before heading out for a celebratory dinner at the Farmhouse Grill. Sunday was a little quieter with a morning at the Blue Lagoon water park before a late lunch at the Knights Tarfan.
![IMG_4770[1]](https://i0.wp.com/7yearstodiagnosis.com/wp-content/uploads/2019/09/img_47701.jpg?w=386&h=515&ssl=1 "IMG_4770[1]")
I’ve made no secret of the fact that the Hard Rock Café is not only a firm favourite when it comes to choosing somewhere safe and delicious for the family to eat, but is also now something of a tradition with one of the children, almost always M, asking whether there’s a branch for us to visit whenever we go somewhere new, no matter where in the world we are. Believe it or not, it is also a question raised when we investigate holiday destinations, though it has not yet dictated our final vacation decision. I fully accept that I am to blame for my children’s obsession with going to as many HRC locations as we possibly can and the collection of their “City tees” carefully stored under my bed is testimony to just how long my love affair with HRC has been going on.
Despite our initial false start and unexpected visit to their Piccadilly branch – and deciding that that is somewhere we will definitely go back to eat another time – we eventually reached Mayfair in one piece and after a somewhat lengthy wait, finally sat down to enjoy our dinner.
What we weren’t anticipating was a visit to another UK HRC location just 2 weeks later during our Manchester adventures. This unexpected surprise was thanks to the eagle eyes of M, who, despite being told by me that I thought the Manchester branch has closed down in the time between my university years and today, spotted it on the Google map as we were planning our walking route from the IWM North to the escape rooms. Just as in London, it was the perfect ending to our weekend there and they devoured their meals with an enthusiasm no doubt stoked by their time skydiving. M decided that this time he’d venture away from the pulled pork and instead ordered a GF legendary burger, which he proclaimed to be just as delicious as he hoped.
Marco’s New York Italian, MediaCity
Their service from the beginning of our meal to the very end was absolutely impeccable. The manager arrived at our table with a form to complete, but this was simply to record our contact details and what the allergies were so that every meal coming out of the kitchen could be recorded and checked before it was brought to the table. For the first time in an awfully long time, G and M were able to have a 3-course meal and every bit of it was absolutely delicious. G started with garlic bread, then enjoyed an American pizza and finished with a bowl of vegan vanilla ice cream; whilst M opted for New Orleans Shrimp, Spaghetti Bolognese and apple crumble with ice cream.
IWM North Café
Sweet Mandarin
Sunday was dedicated to the 
see G’s reaction to the photos and displays about this more recent crisis and she was keen to express her thoughts about the responses of politicians and their excuses for not doing what they knew was needed.
Our decision to go to Manchester were twofold, the first being the IWM North, but our second was perhaps the more exciting, especially for G and M. This was the day for their indoor skydive in aid of Over The Wall and despite a somewhat grumpy start from our youngest, we arrived at 
7 years to diagnosis 