Two months ago, Sue decided to take on a fundraising challenge for Metabolic Support UK. Sue’s husband, Carl, lives with Pyruvate Kinase Deficiency (PKD), which affects how his red blood cells are broken down and means that he has to have blood transfusions every two weeks. For her challenge, Sue decided to give up alcohol for a whole year! Two months on, Sue’s been experimenting with mocktails!
“Hi again! Well, everyone, this month, I have been exploring mocktails. I know…its’s tough….but someone had to do it! With the summer holidays now nearly over, but the weather continuing to be warm, it was time to be a little more adventurous with the soft drinks.
We were brave this month and took a few days away in sunny Plymouth. Charlie (the dog) went off to be looked after (spoilt and adored) by a close friend. The few days away were a profound relief after spending so much time “Chez Lander”. The weather was lovely, mostly. I’m ignoring the monsoon that erupted one evening, as we were safely under cover. We watched it with awe and were very grateful that we were not in a tent (unlike my poor sister and her family).
So, back to the mocktails! In the past, I have been very partial to a pina colada and a rum punch, so this seemed like a good place to start. Following a little experimentation, here are some of the results:
The holiday was lovely. Not least because, for once, we didn’t have to take a child to A&E! They have been particularly skilled in ensuring that this has happened on most of our past holidays. We have an impressive list of broken body parts and limbs trapped in play equipment/railings, etc. For once, it was just a relaxed break, great food and the odd harbour trip and crazy golf round thrown in.
Thank you all for your continuing support for Metabolic Support UK – you continue to be amazing. You can still give a donation to the charity, if you wish, via my Virgin Giving page here, to further help the great work that they do. Donations are really important at this time due to the impact of COVID-19.
Here is one of the recipes that we were obliged to enjoy 😉:
Thank you to Sue for sharing your mocktail discoveries – they look delicious!
If you would like to take on a fundraising challenge for Metabolic Support UK and would like some advice on how to get started, please email Maggie on margaret@metabolicsupportuk.org
Pyruvate Kinase Deficiency (PKD), which affects how his red blood cells are broken down and means that he has to have blood transfusions every two weeks. For her challenge, Sue decided to give up alcohol for a whole year! One month on, we’ve been catching up with Sue to see how she’s finding the sober life!
depend on when the hospital can fit him in. Consequently, he is looking forward to feeling less exhausted through a low HB. We are even considering going to sit outside a cafe with a cup of tea. I know, it’s amazing how such a simple action seems fraught with danger. Who needs bungee jumping for thrills?!
Are you looking to expand your baking and cooking repertoire? Experimenting with new recipes can be good fun and who doesn’t enjoy some variety at mealtimes. But do you find yourself asking why didn’t my bread rise? Or why does my pasta stick together?
differentiate between play time and the need to do school work, routines will help them adjust. Wake your child up at the usual time that they would get up for school, follow the usual “getting ready for school” practices and you may even want to get them to put on their uniform, so that they’re aware that today is a school day.
find ways to teach. There are lots of useful resources out there – take a look at our recommended resources guide at the bottom of this blog for further inspiration.
or the time of day and the app will suggest a meditation according to your mood and your current time of day.
ways. Plus, it has a happy ending. It’s one of our all-time family favourites and a must-watch!
Support UK!
Baking is a great way to relax and get creative at home. Why not try one of our low protein cupcake or biscotti recipes! Great to make with the kids or just for your own enjoyment. Remember to share!
merchandise that you have, to promote awareness of a cause that you support. Add the donation details of your charity to your photo to make it easier for your followers to send a few pennies along to your chosen charity.
could have a night watching astrology documentaries or space-based films, hold a star-gazing evening and teach others about the different constellations in the sky, or host a dinner party with space inspired foods!
Musgrove Park Hospital in Somerset to Guys St Thomas’ Hospital in London by the Children Acute Transport Service (CATS) team. It was a very distressing time for the whole family and we were told to prepare ourselves for the worst, as they honestly didn’t think Tayla was going to pull through. We were there for 3 weeks until one doctor came on duty and ran some tests for a Urea Cycle Disorder, and that’s when we were given the news that she had 
Tayla even decided she wanted to go as the word medication for World Book Day, so she could show all her friends exactly what she needs to keep her liver working properly.”
community in their local areas, enabling us to reach many more patients and families. They are also helping us spread the word by raising awareness and fundraising.
Our 
marathon runners and their commitment to train, run and fundraise in support of Metabolic Support UK, whatever the weather!
“There’s no doubt, I was born to be a runner. I enjoy it. I like the thrill of getting out with the dogs in the crisp winter air, feeling invigorated as I pilot new running routes around the Cotswolds. The only thing, which really frustrates me, is when my Garmin has no signal, causing me to jump frantically up and down like a frog on a lily pad, so I don’t lose momentum. Yes, admittedly, I am now one of those people, who I used to look at and despise. This was usually from the confines of a pub, watching the vibrant streak of lyrca whizz pass the window
marathon runners and their commitment to train, run and fundraise in support of Metabolic Support UK, whatever the weather!
Who 
of London for the London Marathon! We are always in awe of our incredible marathon runners and their commitment to train, run and fundraise in support of Metabolic Support UK, whatever the weather!
community together to fundraise for Metabolic Support UK and to celebrate the life of Anna, their daughter, who very sadly died of GM1 Gangliosidosis, aged 1. They organised a classical concert music, which proved to be a huge success, as Sarah, Anna’s Mum, explains.
The concert was a rip-roaring success both from the turnout and from the feedback given on the night and since the concert. With family and friends spread far and wide, we knew not all would be able to come. So, alongside the concert, we also ran a Just Giving page to provide an opportunity for some of them to contribute. This was a brilliant idea! We raised £660 through our Just Giving page alone! With the money raised on the night and other donations received, we have raised a staggering £3,018.22! As a family, we couldn’t be prouder of this achievement and all for a cause so close to our hearts.
5. Do you have a favourite running route?
of London for the London Marathon! We are always in awe of our incredible London Marathon runners and their commitment to train, run and fundraise in support of Metabolic Support UK, whatever the weather!
We hope your training continues to go well Mike!
2. Raise Awareness
Connecting People
