Category Archives: Chronic Illness

Hitting 12

It may be International Women’s Day, Jedi Day (thanks to Mark Hamill’s Hollywood star) and the eve of National Science week, but in our household, there’s only 1 thing that March 8th marks and that’s young Master M’s birthday. Except this year he’s not quite so young, having hit 12 years already – and just how did that happen? – and I can’t believe that this will be the last year that we only have 1 teenager in our household.

Today has been a great day at school for my youngest and despite a reluctant start to the day, he came bouncing back to the car at 3.30pm, keen to share everything that had been good about it. It’s not been the celebration that perhaps it might have been given the topsy-turvy nature of the last 2 weeks for our family, but it will be the celebration that we want it to be.

Happy 12th to my beautiful, strong, sensitive boy; who pushes the boundaries at every step, but has a true heart of gold xxx


Show Your Rare

The last day of February every year is recognised as Rare Disease Day. It’s a day to raise awareness of rare diseases and acknowledge the impact they can have on those living with them and their families. This year marks a decade since the first Rare Disease Day was launched and will see thousands of people from across the world come together to advocate for greater patient involvement when it comes to research into rare diseases.

Rare Disease Day was launched on February 29 2008 as “A rare day for very special people,” and has grown from being recognised in just 18 countries to now hosting events in over 100 countries worldwide. EURODIS, the European Organisation for Rare Diseases, organises the international campaign, whilst National alliances and other patient organisations host events locally. There are over 6,000 rare diseases known to be in existence and 80% of these have been identified as having genetic origins. Astonishingly, approximately 5 new rare diseases are described in medical literature every week.

Rare diseases can affect everyone, they’re not fussy about who they pick on. Over 3.5million people in the UK are affected by a rare disease, which equates to 1 in every 17 UK nationals. Somewhere between 50% and 75% of rare diseases will affect children and scarily, 30% of rare disease patients will die before they reach their 5th birthday. The symptoms of a rare disease are frequently multiple and varied and not only are they not exclusive to that illness, but neither are they all experienced by all patients, which makes diagnosis a long and drawn out process. All too often the diseases are misdiagnosed and beneficial treatment can be unavoidably delayed. A lack of scientific knowledge and consensus throughout the medical community can add to the complexity of reaching a diagnosis and adds significantly to the burdens placed on the patient and their family.

Imagine being told that your child has a chronic illness that neither you, nor most of the medical professionals you’ll end up meeting from that point on, can pronounce – or have even heard of until that moment. Imagine finding out that that illness is rare: that around 1 in 10,000 people are diagnosed with the most common form, but that your child has one of the rarest forms and that there is little research into it. Imagine learning that even the medical community struggles to reach a consensus about this rare disease and whether it really exists or is simply part of a much bigger picture – and having to live with the reality of this rare disease and its effects on your family’s life on a daily basis.

And then imagine finding out, less than 5 years after the time when that initial diagnosis was finally made, that another rare disease has landed on your table and you need to find out as much as you can about it to make sure your growing child is receiving the very best care possible. That happened to us about 6 months ago, when we started to explore whether M could also be living with Mast Cell Activation Syndrome, or MCAS. It seems highly likely that he is as this is a condition that closely resembles EGID with its symptoms and is a problem with another type of blood cell: the mast cell. Treatment-wise, there is nothing more we can do than we are already doing in terms of his medication and dietary restrictions and so in many ways this is just another label to pop in our pocket and pull out from time to time. All we can do is stay positive, keep encouraging him to live life to its fullest and enjoy every moment we can.


Daddy’s new toy

Somehow, and I’m not entirely certain how, we have limped our way through what has proved to be a tough 5-weeks and finally Term 3 has drawn to a close and half-term has arrived. M’s health was hit hard when he came down with Aussie ‘flu just into the New Year and the term has been turned topsy-turvy as he’s struggled with high temperatures, heavy head colds, aching joints, lethargy and low energy levels. He’s also been trying to cope with unbelievable bouts of insomnia since the end of last term, a problem that has taken its toll not only on M, but the rest of the household too as Mike and I have juggled home and work as well as the impact of the serial bed-hopping that has become an almost nightly occurrence. Except on Wednesdays. I’m not yet sure what makes Wednesdays so special, but over the last couple of weeks, M has achieved something that has been such a rare event that I can pretty much count the number of times it has happened in his lifetime on the fingers of one hand. In bed – his bed – fast asleep and then nearly 10 blissful hours of interrupted sleep for the rest of us!

One of the highlights of half-term has been opportunity to finally try out the new toy that Mike had for Christmas. A stove-top smoker. Following the discovery of what quickly became a new favourite with M when we were in Greece last summer, Mike has been exploring whether there was any way to replicate the delicate flavours of this smoked chicken at home. He talked a few times about the possibility of buying a smoker, but as so often happens in our household, the chat didn’t lead anyway and eventually the idea faded away into seeming obscurity. However, whilst all thoughts of a smoker had disappeared from Mike’s head, it had taken up permanent residence in my mind and I was undertaking some research of my own.

Finding the perfect Christmas present for my other half is always a challenge, particularly as his birthday is just 2 months before, but waiting until December gave me enough time to read around the subject and pick out what I hoped would be the perfect choice. It came as a complete surprise on Christmas day and a present that both Mike and M were looking forward to experimenting with in the New Year. Sadly ‘flu got in the way of any such trials in January, but Mike being at home with the children for half-term gave them the perfect opportunity to give the smoker and a variety of wood chips a whirl.

By the end of the week, it turns out that Mike’s worked hard to see just what flavours he can produce and M feels that there’s still some work to be done to perfect the chicken to his exacting standards. It appears it’s all too easy to over-smoke the meat and end up with a bitter dinner, rather than the aromatic flavours we were hoping to find. M has suggested adding lemon and herbs to help flavour the chicken and I’ve no doubt that Mike’s new toy will be a source of much fun and experimentation over the coming months.


#FFFA18: The Shortlist

It’s really only been a couple of weeks since I was a third-time judge at this year’s FFFA and the exciting news is that the shortlist for the Awards has already been published. I absolutely love scanning through the shortlist, even for those categories where I’ve been involved in the judging, because I find it so encouraging to discover a plethora of products, many of which I’ve never heard of before, which will make such a difference to those living with a variety of food allergies. As well as those I’ve already identified as particular highlights for me on the day, I was excited to see La Crèmerie’s rice yoghurt detailed on the Milk Product Alternatives list. I actually discovered this rice yoghurt during my visit to the Foodmatters Live conference back in November and whilst I have yet to try this with M, I know it’s something that could be a real game-changer for him and I’d love to see this do well in the overall Awards.

What has been even better for me this year than list after list of amazing foods, is the final named category: the FreeFrom Hero Award. Back in December I was asked if there was anyone I would like to nominate for this special category and it’s been really encouraging to us as a family to see our 2 nominees appear on the final shortlist. You can only imagine my delight this week as I received copies of the emails that have been sent to tell our very own heroes of their success. When you look at the list I’ve no doubt that you’ll immediately be able to identify one of the nominations I made, that of Steve Whitaker and Jason Conners, the cooks at Over The Wall. Ultimately I don’t know whether either of our suggestions will be the winners of the category, but I wanted to share my reasons for nominating this fantastic pair for special recognition at FFFA18:

Your reason for nominating them: M’s rare gastro condition, complex food allergies, restricted diet and associated problems has meant that he has never been able to stay away from home except with his Grandma. At nearly 12, he has never stayed away on a school camp or even had a sleepover with friends. In 2016, he was offered a place on the South Health Challenges Camp run by charity, Over The Wall, which meant he would be able to stay away from home for a week, fully looked after by an amazing group of volunteers who cheerfully give their time to support these children, who suffer with life-changing illnesses.

In preparation for the week, I spoke to OTW several times to discuss M’s dietary needs and at least 2 months before camp, I was sent a sample menu of the food that the chefs were planning to cook for him based on his extremely limited diet (just 5 foods plus 1 oil and sugar), which was truly amazing and that M loved the sound of. We touched base the week before camp to just check whether there were any changes and when we arrived at camp, the staff took time to meet with me to discuss all of his needs.

M ate like a king the entire week he was away and reluctantly told me that “Sorry Mummy, but their food was even better than yours!”. He was kept safe, had no allergic reactions because of their incredible awareness of the care that needed to be taken, was able to make friends with others facing similar health challenges, tried out so many experiences he’d never been able to have before and just felt like a child as his health problems firmly took a back seat to the more important job of him just having fun. As Mum, I felt confident that they knew what they needed to do to support him and have subsequently seen just how amazing their care can be when they called whilst G was away on sibling camp because they were concerned that she wasn’t eating the GF/DF food they were preparing for her.

We are hoping that he will be able to go to OTW camp again this year, but are just so grateful that he even had that opportunity to experience it once. These chefs (and all staff to be honest!) really deserve recognition for making M’s first experience of being away from home such a positive one.

The results will be announced on Twitter, on the evening of April 17th (@FFFoodAwards) and I’m hoping that we might once again be able to be there to recognise the hard work and incredible dedication of all those shortlisted finalists as well as celebrating the success stories of the worthy winners.


Every little helps

This week marks the start of the 2018 Free From Food Awards (#FFFA18) and another stint of judging, something that has become a real highlight of my year, especially as it brings a highlight to an otherwise grey and somewhat miserable month following the excitements of Christmas. Ever since the list of fellow judges reached my inbox, I’ve been looking forward to the day itself as I will be a judging a new category to me with a group of fantastic bloggers and friends that I’ve got to know over the last few years and I’ve no doubt it’ll be a day filled with laughter and chatter and good-natured banter.

However, with the FFFA just around the corner, I’ve realised that I owe an apology to a fellow judge from last year’s awards, who gave G in particular a great opportunity after we met and who I never got round to thanking via my blog. Mike and I were fortunate to meet Nicki, a Brand manager from Tesco, who was keen to send some samples of the then new range of Freefrom chilled meals that Tesco were about to launch. A cool box of meals arrived with us and G, Mike and I all enjoyed trying and tasting the variety available to anyone looking for a gluten-, dairy- and egg-free ready meal. They weren’t all to G’s taste, but it was wonderful to see the selection she was able to choose from for dinner.

From traditional Chicken Hotpot with stuffing and Beef casserole with dumplings – both of which G loved – to the more exotic flavours of Katsu Chicken curry and Green Thai Chicken curry – which became firm favourites with Mike and me – there really is something for everyone. G is not always the bravest when it comes to trying new dishes and some of these really did push her taste buds to their absolute limit, but I was impressed, for the most part, with the quality of the meals as well as their flavours. The biggest disappointment was the two Italian dishes: Chicken, Bacon and Mushroom pasta and Pulled Beef and Red Wine Ragu with Spaghetti, neither of which survived being frozen and then recooked at a later date. Both the pasta and the sauces became watery and were, in our opinion, frankly inedible by the time they reached the table. It was disappointing as pasta is usually a favourite in our household, but having had surprising successes with some of the other meals, my overall review would definitely be positive about this new range. As much as I love to cook from scratch, and usually do, the opportunity to be able to keep a few firm favourites in the freezer for those unexpected times when being able to throw something into either the oven or microwave is much-needed is absolutely invaluable to me as a working Mum and I’m grateful to Tesco for creating these dishes.

Just the other day, I was reminded once again of just how far the supermarkets have come with their allergy-friendly offerings since our freefrom journey started, when I spotted this fantastic array of dairy-free choices in the fridges of our local Tesco. It was an absolute delight to be able to take my time exploring all that was there to see what treats I could find for G to enjoy at the end of her meals. These are exciting times for those of us in the allergy community as more and more shops, cafes and restaurants strive to improve and increase what they offer to those on restricted diets and I’m delighted to be a part of it.


Taking Over once again

In November 2016, G and M were lucky enough to be invited to participate in the first ever Takeover Challenge at GOSH. They spent the day running the Development and Property services department at the hospital and even managed to somehow convince the staff to take them onto the building site of the new research centre being built opposite nearby Coram Fields. One of the jobs they had undertaken during that Takeover Day was to help design the hoarding to surround the building site and we were delighted to see it in place when we visited GOSH for the Big Youth Forum Meet-Up in mid-October as both children got to see their hard work actually being used in real life.


So it will come as no great surprise that the minute they heard that there would be another opportunity to Takeover at GOSH this year, both G and M leapt at the chance. Unlike last year, when they opted to be part of the same department, this year they determined to do different things and each took on very different roles with G joining the ICT department as an ICT project manager, whilst M became a clinical scientist for the day. We were fortunate that their secondary school recognised the value in them attending this day and were happy to authorise their day off, something that M in particular was delighted about. I was already in London for the week attending the Foodmatters Live conference and so Mike set off from home extremely early on the Wednesday morning to get the children to the GOSH reception area in time for their respective days to start.

We had arranged that I would meet up with them for tea and over an early supper at Wagamama in Leicester Square, I was regaled with excited tales about the adventures of their day. G’s day was spent learning about how the ICT department is involved in the day-to-day running of GOSH and more specifically understanding how the staff ICT helpdesk is run and looking at solutions to common IT problems. G had an opportunity to visit different hospital departments and help resolve the problems some staff members were experiencing and even managed to successfully close a couple of cases herself. Her final task of the day was to visit the brand new clinical building that has recently opened at GOSH and understand how the decisions around what ICT equipment to provide for patients are made. One of her mentors for the day also took her to visit one of the laboratories in the hospital knowing that M was based there, although she didn’t spot him during her visit.

M’s day was focused on understanding the role of the clinical science team at GOSH and in particular learning more about gene and cell therapies as well as the research that is undertaken in the hospital. He was keen to take on this role because of the rare status of his own condition, EGID, as it demonstrated just how important this type of research is. M spent the day  learning how to split blood samples into different cell types, preparing the cells for analysis, generating DNA fingerprints and analysing DNA for mutations. The team also showed him what eosinophils look like when they’re put under the microscope and gave him an insight to what his scopes might have looked like prior to his diagnosis. As usual, M learned a lot from his day and when he and I attended our local hospital a week later for a set of bloods to be taken, he was keen to explain to the nurses there just what would happen next with the samples they were taking from his arm.

Both G and M had an amazing day at GOSH and we are, as ever, extremely grateful to the YPF and youth liaison team who not only offered them this fantastic opportunity, but also made sure the day was a huge success for them both. I know M already has his sights set on Taking Over yet another department next year, but we will just have to wait and see what happens!


Unexpected Christmas treat

Whenever I write a review and share it on my blog, I do so because I’ve found a product or place that I’m impressed with and want to spread the word throughout the allergy community. Sometimes I’ve been fortunate enough to have received a freebie or two in advance for us to taste test and review – something you will always see declared on my posts – and I guarantee that we will always be honest with our opinions. It’s true that I rarely share things I don’t rate, although when I’m less than impressed with the service we’ve received, I will always make sure I shout that from the rooftops too. However, I never review with an expectation that we will receive something afterwards, though I’m honest enough to say that it’s always nice when we do!

That’s why, when I wrote about my discoveries at the FoodMatters Live conference a couple of weeks ago, I did so because I was just thrilled to have some new goodies for M to safely enjoy, which is always fantastic especially in the lead up to Christmas. What I didn’t expect was this marvellous parcel that was sent on to me just a few days after my post was published:

M spotted it propped up against the front door as we drove onto our driveway after school on Tuesday and was eager to be the first out of the car and to the door to pick it up and discover what had been delivered. His glee when he spotted the “Freedom Mallows” label on the front was unstoppable and he couldn’t wait to get it to the kitchen table and open it up. I had been in the know, as Elvin had contacted me asking for a postal address, but I’d only expected a small bag, or maybe 2, of mallows which I could sneak into their stockings on Christmas Eve. The treasures hidden within this box are immense and no stocking in our household is big enough to hold it all. Without a doubt, the excited squeals of both G and M which shook our house reverberated around our village and I just wish I could adequately capture that moment of absolute joy to share with you all.

A big thank you to Elvin at Freedom Mallows – you’ve made 2 not-so-small-anymore children very, very happy!


Big Youth Forum Meet-up

In the middle of October, a group of over 80 young people from across the country gathered at Great Ormond Street Hospital for the first ever national Young People’s Forum (YPF) meet-up. Organised by members of GOSH’s YPF, the event looked to provide an opportunity for discussion about the practical and emotional issues that impact young people when they are in hospital as well as running workshops teaching a variety of skills from basic first aid to how to run a successful national awareness campaign.

Never ones to miss a great opportunity, we checked the proposed date for the meet-up and signed both G and M up to be a part of the day as soon as we could. G has been a member of the GOSH YPF for over a year, whilst M had been counting down the days to his 11th birthday so that he could similarly join the group. He finally attended his first meeting earlier this year and was thrilled to be able to be a part of this inaugural event, especially when he revealed that they were hoping to invite a celebrity to take part in the event too. It proved to a real learning experience for them both as they were invited to take part in the planning for the day itself via conference calls, a life skill that I never imagined them learning before their careers kicked off. We sat around the kitchen table, discussing conference call etiquette, the need to keep your phone on mute until you actually wanted to speak and the importance of listening carefully to what the others involved had to say.

After weeks of careful planning, the day finally arrived and we made our way across London to GOSH bright and early on the Saturday morning, following the signs that had been chalked on the surrounding pavements to help the visiting youngsters find their way. Mike and I were excited to learn that their celebrity guest was comedian Alex Brooker, star of “The Last Leg” and himself a former GOSH patient. G and M were less impressed, neither knowing who he was and whilst M was initially quite disappointed that his own top pick, magician Dynamo, was not going to be there, he very much enjoyed the opening talk that Alex gave to the group of young people attending the Big meet-up.

From what they told us afterwards, the day just flew past and they were keen participants in every activity, including covering their arms with a selection of temporary tattoos recently designed by GOSH Arts with the help of a few members of the YPF. G decided to attend the First Aid workshop, where she learned the basics of CPR as well as how to deal with anaphylaxis and administer epi-pens. She was particularly delighted to learn this latter skill as it was something that she and M had requested be a part of the First Aid training given. M, on the other hand, opted for a workshop ran by consultant paediatric surgeon, Ross Fisher teaching practical presentation skills, which he has subsequently put to great use at school. All in all, G and M had a fantastic day and are already looking forward to next’s year national meet-up, which is being hosted jointly by the Nottingham and Derby YPFs.


FFEOA 2017

This week has been a busy week for me and, for the first time in very many months, my focus has all been on my blog and the allergy and freefrom community, rather than on my day-to-day job. Much to the disgust of both G and M, I abandoned them to my Mum for the week and headed off to London, on my own,  to the Foodmatters Live conference. My planning for these 3 days away was incredibly well-organised, though I suspect I actually have my Mum to thank for that, as I missed out on attending last year and so had apparently looked ahead 12 months and had put the dates on her calendar to make sure I could go. I had then promptly forgotten all about it until she pressed me to confirm whether the children would be staying with her for the week or not.

My main focus was the Awards ceremony on the first night for this year’s Free From Eating Out Awards (FFEOA 2017). Despite the chaos of our household right now as Mike and I are both trying to find a work-life balance that suits us all, I had been keen to be a part of the Judging team again this year and M and G were just as excited by the possibility of finding some new places to eat that would suit us all. Luckily for us, we were able to find a couple of restaurants that we felt could cater for M in particular and were delighted to put them through their paces and see just how well they could meet their allergy and freefrom promises.

The evening kicked off with a quick overview of the plans going forward for 2018, which included some new categories, a simplified entry process and the promise of a monthly newsletter. They also revealed the new interactive map, which shows all the bronze, silver and gold award winners for the last 3 years and links to the all-important judges’ comments, which can help any discerning freefrom diner decide whether to eat there or not. I think this will be a great addition to the FFEOA offering and certainly will be something I recommend to those I come into contact with in the allergy community.

Despite my best efforts on the night itself, my fingers weren’t quite nimble enough and I just couldn’t keep up with tweeting the impressive number of gold award winners that were announced in each category. For any I didn’t manage to congratulate then, my apologies, but from the sounds of it, each and every award was well-deserved. I must make special mention of the wonderful Cafe Nouveau in Frome that we judged last year, who succeeded in achieving another gold award this year and also the Bangkok Canteen in Gloucester, who also won gold this year. Mike, the children and I visited there as part of this year’s judging stint and a review will follow in due course. For a full list of this year’s winners, please visit the FFEOA website.

As ever the best bit of the evening came after the awards had been announced. I was able to spend some time chatting with a few of the lovely friends I’ve met through the allergy world over the past few years, including Natalie of Intolerant Gourmand, Ryan of Borough 22, Ruth of What Allergy? and the Free From Fairy herself, Vicki. All in all, a wonderful evening and a great start to 3 days of learning more about all aspects of the Freefrom and allergy world.


Unexpected Greek Treats

We might have packed a suitcase full of a variety of allergy-friendly foods to keep us going during our 10 days in Greece, but, as ever, we kept our eyes open for any M- and G-friendly Greek treats that we could spot in the supermarkets. delicatessens and local shops in Athens and on Syros. I had no doubts that we could find the bare essentials of soya milk, goats’ cheese and rice, but it’s those unexpected finds that make all the difference when we’re travelling as a family.

The first fantastic find, and one that we found ourselves stocking up with to last the duration of our stay, was this unassuming pack of smoked chicken fillet that quickly became a firm favourite with M. Mike had ventured out of our Athens studio one afternoon and found a delightful small deli less than 5 minutes walk away. They had a huge selection of fresh and dried olives, oils, cheeses, breads and cooked meat, but it was the smoked chicken that caught his eye as we had been struggling to find an appetising way to cook and serve chicken for M, who is not the biggest fan of cold chicken at the best of times. The smokey flavour was something new to him and whilst he was prepared to let the rest of the family have a small taste to see just how delicious it was, he insisted that the remaining slices were his and his alone. Mike also discovered these brown rice cakes with pink Himalayan salt, a surefire hit with M and the perfect base for his smoked chicken fillet sandwiches that became a lunchtime staple.

As we had expected, we had no problem in sourcing goats milk, butter and cheese for G in Athens and were also delighted to find both almond and hazelnut milk there too. She quickly fell in love with the traditional Greek Feta cheese and ate it as frequently as M devoured the chicken fillet for lunch. We also found a small selection of gluten-free crisps that they both enjoyed on occasion as just a small snack when needed. However, it was on Syros that we were truly amazed by the unexpected plethora of allergy-friendly foods we found in the very small supermarket in the seaside village of Finikas. When we ventured inside on our first day on the island, we were hoping that we might be lucky to find some soya milk for G to drink and were completely blown away by this astonishing selection of dairy-free alternatives, from almond milk to chocolate soya milk, goats cheese, butter and yoghurt, and the one item we had never expected to find there: rice milk.

This tiny treasure trove also stocked a small, but comprehensive selection of gluten-free products including rice cakes for M, gluten-free pasta, bread and biscuits. We bought a couple of different flavours of the allergy-friendly biscuits that quickly became a favourite with G. These were a welcome treat and alternative to dessert for her especially when accompanied by some small slivers of Feta, whilst M enjoyed the opportunity to pick and devour fresh figs from the trees surrounding our villa at the Good Life. Having discovered these unexpected Greek treats, we made an effort to buy a few extra packs of biscuits and rice-cakes alike to bring back home with us to keep the memory of our Greek adventures alive for just a little longer.