Tag Archives: ill health

When 37 is the new 46

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There’s something special about being able to celebrate* two milestones in my life on the same day. February 24 not only marks 46 years since I came into this world, but also 37 years of conquering an illness that could easily have seen it end if not for an awe-inspiring medical discovery in 1922.

The last year has seen a lot of changes for me in all aspects of my life. I was appointed as the Finance Director for the charity I’ve worked for over the last 3 and a half years or so, which has stretched me in ways I couldn’t have imagined, but has also been more fulfilling than I could have hoped. Working within the social care sector during a time of financial crisis following 2+ years of pandemic has been challenging, but the things I’ve learned and the friendships I’ve built at work have bolstered me during what could easily have been some mentally exhausting moments.

Both children  – well, I say children, but really now one adult and one in their late teens – have started to explore and venture out onto the next steps in their lives and I’ve had to learn to balance wanting to solve all of their problems myself with allowing them to make their own mistakes and find their way through those challenges as best they can with our support as needed.

And my 37th year with T1D has seen another new technological development for me. Seven years ago I spoke about my introduction to the Freestyle Libre, the flash glucose monitoring system which turned me into the bionic woman and transformed the way I tested my blood glucose levels. Seven years on, my whole T1D life has been revolutionised once again as I’m now the proud owner of a “hybrid closed-loop system” or artificial pancreas, to use the vernacular, which allows my insulin pump to speak to the CGM (continuous glucose monitoring) I wear and adjust the steady administration of insulin to adapt to my changing blood sugars, activities and food intakes.

When that diagnosis happened on my 9th birthday, I’m not sure any of my family could have imagined the changes and developments that would happen to mean that I could spend a little less time focused on getting through each day with T1D in one piece and a little more on enjoying all that life has to offer.

Today will be a quiet day with family, enjoying time with my most favourite people in the world and loving the life I’m able to live with a new constant companion, my insulin pump, to help manage the one that’s been there for almost as long as I can remember. It is time to celebrate both of today’s occasions and I will certainly be raising a glass and a cupcake to do so.

*I thought long and hard about whether celebrate was the right word here or not. Should I have said that I “mark” these landmark points in my life rather than “celebrate” them, but I decided not. I do celebrate 37 years of living with T1D, of surviving all that it has thrown at me over the years and that is something to be proud of and that’s worth celebrating in style.

Re-opening the World – 7Y2D COVID-19 Diaries Week 15

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How has the easing of lockdown affected you and your family? Have you gone back to life as it was pre-lockdown, are you still following strict social distancing or shielding rules, or are you slowly working towards finding your feet in your new normal?

The last few days have been interesting ones for me as I’ve started to receive phone-calls from local services and businesses as they begin to re-open their doors and are keen to get people in after months of self-isolation. I’m sure there are those that will think I’m being overly cautious, but my answer to each of those enquiries has been simple: thank you, but no thank you, not at the moment. Having strictly restricted my movements over the last 15 weeks, I’m not in any rush to get back to the way things were before lockdown happened and will be keenly watching to see what happens over the next few weeks, particularly as pubs and restaurants reopen this weekend as well as some other businesses.

We’ve also been prepping to make sure we have everything we need as we do start to move towards relaxing our own version of lockdown. Despite the reluctance of the UK government to mandate the wearing of face masks or coverings when out and about in England, we have discussed the importance of them with G and M and agreed that the whole family will be wearing them once we start to venture further afield. Mike is already wearing a mask daily as he travels for his work and M has independently decided that he will wear his when he goes into school next week for an hour-long “keeping in touch” session before the end of the school year.

Both children had input into the face masks that they wanted to have and are happy to wear them when needed. We knew that having their buy-in was important, not least because there is a requirement to wear them when going into hospital for appointments and sooner or later that will be necessary for M and me, although we both currently have either telephone or video appointments booked for later this month.

Whatever your movements this weekend, be it to your local pub, restaurant or simply more staying at home, stay safe and keep well.

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

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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.

#FFFA20 – 5 years on

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Last week saw me back in London for one of my all-time favourite events of the year: judging a couple of categories for this year’s Free From Food Awards (#FFFA20). It hardly seems 5 years since I completed my first stint and I can honestly say that every year since has been fantastic. It’s a day spent with an amazing group of people from the free from community, be they bloggers, allergy sufferers, parents of children with allergies, food manufacturers or producers. Every year sees me widening that tribe of mine and I absolutely love getting to know new people and oft-times linking faces to names I’ve seen across the various social media platforms I frequent.

This year saw me return to 2 of the categories judged at my first FFFA in 2016 – “Meaty & Fishy Ready Meals” and “Confectionery”. As ever I’m always on the lookout for new possibilities for both G and M and even more so this year as we see the number of safe foods for M slowly, but steadily increasing. I find it fascinating to see what products are entered into each category, particularly with the “Meaty & Fishy Ready Meals” as the range of options can be so wide. From 10am, we were tasting and critiquing breaded fish, breaded chicken, sausages, burgers, a few microwave meals and even a prepacked sandwich. What was particularly great this year was that there was nothing that was really dreadful and whilst not everything might have been to my taste, the final award winners are all very much deserved in my opinion.

My own highlights from this category include:

M&S Made Without Wheat Honey Roast Ham and Mature Cheddar Cheese sandwich:  Honestly, if I hadn’t known that I was eating something freefrom, I absolutely would never have guessed. Forget dry bread, hole-y bread, doesn’t-really-taste-like-bread bread…this sandwich was unquestionably as good as its gluten-filled counterparts and generously filled with ham and cheddar cheese. If I had to find a criticism, perhaps that it is a little limited in just being gluten-free, but that really is being incredibly picky. It didn’t really “fit” with the rest of the entries in the Ready Meals category, but with no “Foods to Go” category this year as part of the #FFFA20, I don’t object to it having been entered. This is definitely one that I would recommend to anyone needing or wanting to follow a wheat-free/gluten-free diet.

Co-op Irresistible Pork Sausages: “Wow!” – my honest comment after a taste of these sausages. We are, without a shadow of a doubt, a family that enjoys any meal including sausages and indeed G’s favourite and go-to meal is a plate of bangers and mash. These were delicious – juicy, succulent and absolutely more-ish, the description of these GF sausages as “irresistible” couldn’t be more accurate. We buy nearly all of our meat from our local farmers’ cooperative or from our small-holding friends, but it was great to discover such a good product at a competitive price in a supermarket chain.

Co-op Chunky Breaded Cod (MSC-approved): There were several free-from fish fillets to compare, as this photo shows, but this is the one that absolutely stood out to me. The crumb coating was crispy and robust and the piece I took didn’t fall apart on the fork before it had left the plate and reached my mouth. Well-seasoned, tasty and a balanced mouthful where the fish was definitely the highlight. Even better, the cod is responsibly sourced and MSC approved, which really made it stand out from the crowd.

Tesco Free From Chicken Korma with Rice: A more traditional ready meal in my eyes and a fantastic one at that. Not only gluten-free, but top 14 allergens free and included an interesting mix of brown rice and quinoa in the dish which made it stand out from a competitive crowd. It has been on the supermarket shelves for a little while as this was one of the dishes we were lucky enough to be sent to try just after their launch, but it reminded me just how good these ready meals really are. A rich creamy flavour, which was well-balanced and didn’t taste too watery despite being microwave cooked, something I have found to be the case with other similar ready meal options.

As you can see, it was a real mix of what I would consider the more traditional ready meals that are ready in minutes and foods that need little preparation other than cooking. It was great to see offerings from many of the major supermarkets and, whilst I didn’t mention them above, there were also some good options from both Aldi and Lidl. I love seeing more and more supermarket chains coming on board with their free from food choices and making them more available and affordable than they perhaps have been before.

A Night of SeriousFun

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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.

Hair today…

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…and gone tomorrow!

It’s an old joke, I know, but it sums up perfectly the start of the new school year for G. For those of you who’ve been following me for a while, you may remember that 2 years ago G took the plunge and decided to cut her beautiful long hair for charity. She donated the hair itself to the Little Princess Trust, who use it to create real hair wigs for children who have lost their hair due to intensive medical treatments. G also took the opportunity to raise funds for Over The Wall and it turned into an impressive occasion, leaving her with a very grown-up hairstyle as well as raising £500, which was then match-funded to create a staggering £1,000 fundraising total.

Over the summer months, G has been talking once again about wanting to cut her hair – I think the hassle of combing numerous tangles and knots out of it had all become too much – and so at the end of her second day back at school, she headed to our local hair salon and once again braved the cut. Mike suggested to her that she consider donating to the Little Princess Trust once again and as soon as she realised that there was enough length to allow her to do it, there really was no stopping her.

This time round she’s gone a little shorter than before, but it’s still an absolutely stunning style for my fast growing-up firstborn. We are so proud that she didn’t think twice about making the donation and even more so when she said that she wants to continue to donate her lengthy locks whenever she can. To paraphrase G, she wants to “…donate my hair, just like Dad donates his blood…” – a fantastic ambition and who are we to argue.

20 years of #mischiefandmagic

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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

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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!

Be my Valentine…and #SpareARose

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How did your day start today? With a card, chocolates or maybe a bunch of flowers? A promise for dinner tonight? Or maybe tonight will just be a quiet night in front of the TV.

You can’t have missed that it’s Valentine’s Day today and you may, or may not, be celebrating it.

Whatever your plans, could you please do just one more thing?

By gifting the price of one single rose (£4) to Life for a Child, you will be helping the Diabetes community to “take care of one another around the world” and giving one month’s supply of life-saving insulin to child living with T1D in an under-resourced country.

It really is that easy and what a wonderful gift to share with your loved one this year.

Happy Valentine’s Day!

Polar Dip

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Despite the assertions of some Canadian friends that it couldn’t be a “real” polar bear dip without having to break some ice, in the middle of December Mike decided to take part in our local New Year’s Day polar swim. With just a smidge over 2 weeks to prepare for this madness, you wouldn’t be blamed if you thought Mike was completely mad – believe me when I say it was something that went through my mind too – but the reason for it is actually a fantastic one.

You have all heard me talk a lot about the amazing charity, Over The Wall, who provides free therapeutic camps for children with serious health challenges as well as their siblings and families. G and M have been fortunate enough to go to these camps twice each over the last 3 years and the difference it has made to them both is incredible. Since G’s first trip to the South Siblings Camp in 2016, we have taken every opportunity we’ve been able to find to raise awareness and funds for them – from M’s presentation at school to G’s sponsored hair-cut. I’ve talked to more people than I can even begin to count about just how special this charity is and in the last year have been delighted that 2 fellow EGID Mums were successful in their applications for camps too.

2019 marks 20 years since OTW’s first camp in the UK and they are looking to mark that anniversary by being able to send 1,000 children, young people and families to one of their camps. We want to help them achieve that goal, knowing from firsthand experience just how invaluable their camps truly are, and will be spending the year finding new ways to support them just as they have supported G and M.

And that’s why Mike kicked off our fundraising year in style with his Polar swim. He chose to swim in 9° water for 20 minutes – 1 minute for every year that Over The Wall is celebrating this year – and we set a tentative target of £200. Thanks to the generosity of friends and family, Mike not only more than managed his New Year’s Day dip, but also raised a fantastic £223!

If you’re able to give even a small amount, I know that Over The Wall will make very good use of it and you will be helping enrich the lives of young people living with health challenges, just like G and M. You can donate via their special 20 years donation page here.