It was last summer when I first heard about Over The Wall and the amazing camps they run across the UK for children with serious health problems. M’s GOSH and EGID friend, R and his big sister, I 
were fortunate to go to one and the photos and comments about it posted by their Mum, Annie left me determined to find out more and see whether M might similarly qualify for a place.
Over the Wall is a UK-based charity that is part of the international SeriousFun Children’s Network, which is based on an original idea set up by actor Paul Newman in the 1980s. He identified that the popular US summer camps attended by thousands of American school children every year often left out children living with chronic health conditions because of the inability of camp volunteers to cope with the often complex medical needs. His vision was to open up that opportunity to every child, regardless of their health needs, and he helped to provide full support for every child whilst they were away from home. These children got the full “camp” experience as they were unaccompanied by parents or carers and were able to enjoy a touch of “normal” in their otherwise complicated lives. From that simple starting point, one camp spread across the US and into countries across the world and soon followed the realisation that not only did the sick child miss out, but so, all too often, did their siblings and the idea for a separate siblings camp was formed.
I was delighted to learn about the siblings camp and, feeling that this was another great opportunity for G to escape the constraints of a sick sibling and be surrounded and supported by others in the same situation, duly applied; and so it was that a couple of weeks ago, G headed off to deepest, darkest Dorset for a week of serious fun. Just as her Young Carers group gives her the opportunity to have time away from M with other local youngsters in similar supporting roles, G spent the week with other 8-17 year olds from across the South of England and Wales, who all have 1 thing in a common: a brother or sister living with a chronic health problem. 
It was a week to be herself, not defined or viewed in her role as M’s big sister, and encouraged to take time to focus on herself without worrying about M and how he would feel.
The children who attend are split into 8 groups: 4 colours determined by their age, with orange for the youngest and blue for the oldest; and then each colour split into separate boys and girls teams. Volunteers are a key part of the camps and their numbers match camper numbers, so for the 60+ children on the 2016 South Siblings Camp, there were 60+ volunteers supporting them, encouraging them and making sure they had fun. During the week the teams participate in a number of activities, from swimming to archery and from climbing to arts and crafts and much, much more. Their days are carefully planned with breaks and an after lunch rest hour, which G tells me was strictly adhered to, as well as a cabin chat every evening, where the teams reflect on their days and every member is awarded a bead to recognise what they’ve achieved. 
Discos, team games, inter-team challenges, morning singsongs, new activities, skills learned, old favourites and even a talent show sum up G’s week away.
G’s enthusiasm about her time on camp has been wonderful to hear and she was keen to teach M the camp songs and share so many snippets of everything she got up to whilst there. I love the fact that there was little or no discussion about their chronically ill siblings, but instead the focus was well and truly where it needed to be – on these children who all too frequently miss out. I was impressed with the array of meaningful mementoes that G brought home with her, as impressed as she was delighted. More than just her purple OTW t-shirt and a black one for M, but also a carefully crafted wooden bird-box, team and camp photos, a hand-print card holding the reflections of the team – both peers and volunteers – on who G is as a person and why they appreciated her, and that precious collection of beads reflecting her achievements during the week, recognised by her team volunteers and accompanied by a written record of why they felt she had earned them. All of these things have built up her self-confidence in those few days away and have helped her feel even more valued within this new group of friends.
For us, it was an unnaturally quiet week in the household and there was a definite sense of something missing from our every activity. 
M was reluctant to admit to missing having G around to play with and torment, but his move to sleep in her bed every night she was away revealed the depth of those feelings he didn’t want to show.
As a parent, you know you’re on to a good thing when you child asks for more and G has already asked if we can apply for her to go again next year if at all possible. Her enthusiasm about her experience has bubbled over and infected the whole family with M now having everything firmly crossed that his application for a place on the August Health Challenges Camp is successful. That would see him having those same opportunities to enjoy as G in an environment that we can be confident will be safe for him as there are medical volunteers and 1-to-1 support for the chronically ill children. Even better, the children have decided to make OTW the focus of their fundraising efforts during National Eosinophil Awareness Week this May. The one thing I haven’t mentioned is that these camps are offered completely free to those children who attend, making them truly accessible to all, which is a really fantastic part of this charity. Any funds that G and M can raise will help make a huge difference to others like them and if you’d like to make a small donation, you can do so via this link or the button on the right, with our thanks.
I made some MEWS-free ![IMG_0256[1]](https://7yearstodiagnosis.com/wp-content/uploads/2016/03/img_02561.jpg?w=300&h=225)
After some frantic, yet focused internet research, I found that it was theoretically possible to replace the yeast with a mixture of baking powder and lemon juice and so decided to give it a go.
Do you remember that long, 
although last year was very different as by the time the day arrived, M was only eating rice, chicken and cucumber and our options were limited to 
They are the oldest vegan company in the UK and as well as not using milk, their factory is also gluten- and nut-free. Impressively they were the first company in the world to make dairy-free milk chocolate in 1983 and the first organic chocolate in the UK. Their 
Original, Bunnycomb and Orange.
They also sell 
In addition to virtually every practising dietician in the UK, it is mailed directly to all senior gastroenterologists, all nutrition nurse specialists and all nutrition pharmacists, as well as lecturers, industry professionals, consultant dieticians and students.
For day 3 of 
We weren’t provided with any information about enteral feeding beforehand from the health professionals involved in M’s care and I found most of our information came from online support groups, such as PINNT and 
We’ve encouraged her to get involved as much as possible and as much as she wants, and she is now very capable of helping with his feeding pump. She’s recently started horse-riding, which is something M doesn’t do and gives me some time to spend just with her. As for our holidays, in the past we often went abroad, but didn’t feel confident enough to try it this first year with his tube. Instead we went to Cornwall this summer, with our car packed full of all the necessary medical equipment and enjoyed an amazing week away. We’re now feeling much more able to cope and are hoping to go to Portugal next summer.
*I can’t let today’s post pass without a nodding acknowledgement that it is, in fact, Shrove Tuesday; the day when many of us enjoy a pancake or two before the start of Lent. I can’t even remember whether we managed to eat pancakes last year as M had only just started to trial foods after his 8 weeks on E028, but there’s a sneaking recollection that maybe my Mum cooked some for G, whilst the rest of us ignored the day to the best of our ability. I’m excited that this year I will once again be able to cook pancakes for the whole family and, just in case you need an allergy-friendly recipe to cook for your loved one, I’ve got the perfect one 
![IMG_0063[1]](https://i0.wp.com/7yearstodiagnosis.com/wp-content/uploads/2015/12/img_00631-e1449935678682.jpg?w=257&h=240&ssl=1 "IMG_0063[1]")
It might have been a damp, chilly October morning when we left home, but we didn’t let the weather deter us from completing our “top-secret” mission for the end of half-term – a visit to Station X, otherwise known as 
it fitted wonderfully well with some of the English home-work G had been set over half-term.
all before ending up at the Block B Museum.
film last year’s blockbuster, “
The children were enthralled by the impressive weaponry display, which showed the different types of weapons that would have been used by the cavalry and infantrymen of both armies and treated us, in our front row seats, to a frighteningly realistic charge by the opposing sides. For many, the highlight of the day had to be the battle itself, which was acted out in front of us with a mix of live and recorded commentary to talk through and explain the events as they unfolded. I was impressed with G’s understanding of the tactics employed by Duke William’s army and she was able to hold her own afterwards when in discussion with 2 of the men involved in the re-enactment. It was a fantastic day out, the children now both have a greater understanding of this significant historical event and Mike broadened his knowledge of his adopted homeland too!
7 years to diagnosis 