Category Archives: Chronic Illness

Reaching out

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I am, without a doubt, a firm believer that things happen for a reason and that the lessons I’ve learned, the situations we’ve survived and the successes we’ve fought for and achieved over the last few years have given me an understanding and empathy that nothing else could have done in the same way. I have discovered within myself a strength I didn’t know was lurking, which has seen me through some of the darkest days I’ve ever had to face. My Mum and Aunt love to remind me I come from a line of strong women and these challenges have helped me grow even stronger. The struggles I’ve had to face have enabled me to reach out and bring some comfort and reassurance and offer an ear always ready to listen when others have most needed it. What’s more, not only can I speak from a shared experience and the common bond of parenting a child with a chronic illness, but I want to give support when it’s most needed. you-never-know-how-strong-you-are-until-being-strong-is-the-only-choice-you-haveThat incomparable insight is what almost makes the challenges of M’s health worthwhile, for whilst I would give anything for him not to have to live with a rare illness like EC, it has, without a doubt, given me a compassion and understanding beyond what I would otherwise have known.

When setting up my blog 3 years ago, part of the process was to pen something that would honestly capture who I am and the reasons behind my decision to start it to include in my “About me” page. I won’t deny that this blog has undoubtedly become an inexpensive form of therapy for me, allowing me to explore my innermost thoughts and feelings about the chronic illness that has dominated so much of the last 10 years of our lives as well as sharing our experiences of it; but that wasn’t my raison d’être. What I wanted most was to be able to reach out to others who were facing similar challenges “…if I am able to speak to the heart of even one parent who is going through the same turmoils, then I know the hard work will have been worth it…” In the months since I first wrote down that somewhat ambitious desire, I have received the occasional e-mail telling me that what I’ve written has really resonated with another parent, responses that have meant so much as they acknowledge an achievement of my goal above and beyond what I originally wanted.

Knowing that I have received those messages you could easily assume that I might consider it a job well done and just leave it there, but over the last few weeks I have received more messages of encouragement than I ever anticipated and have found myself in the position of being able to offer support and advice when I least expected it. Those opportunities have drawn on the many facets of my life experiences, from seeking a diagnosis of EC to coping with a new diagnosis of T1D and from facing the daunting reality of tube-feeding to the challenge of switching a child to a gluten-free diet. What is even more amazing is that the people I’ve been talking to have been a mix too: Mums from school, friends met through support groups and those just looking for reassurance from someone who has already walked the path they now find themselves on. I don’t claim to be an expert in any of these things, but I am an expert in my child and our experiences and can offer an insight into how we have coped and the tips I’ve picked up along the way. When we started out on our search for a diagnosis for M, and then again when we made the decision to move to tube-feeding, the information readily available was scant and it took dedicated research and hours of reading, and re-reading, medical journals and the such-like to even begin to understand what we were facing. It was thanks to on-line forums such as FABED and PINNT and their members that we began to truly comprehend the complexities of life with a chronically ill child. social-media-treeMy blog has simply been an effective way to put all of our experiences into one place, hopefully with some useful pointers for others in the same shoes and, by doing that, to create my very own, very personal resource.

What’s even better in my opinion is that my passion to reach out and help others has been adopted by both children too. G has developed an empathy and understanding that extends out from the home into the classroom and wider world, and which has been commented on in recent weeks by her teachers and the volunteers at camp. She shows an amazing amount of tolerance towards the challenging behaviours and differing views of her peers and is always prepared to listen and respect what they have to say, whilst standing her ground with her own opinions. G is also sympathetic to those who are in the same position of having a sibling with a chronic illness and can fully understand the frustrations that the sometimes difficult behaviours of those siblings can cause. Whilst sometimes reluctant to deal with M at home, she never hesitates to offer help to those around her when it’s needed.

In similar fashion, M has developed a compassion that I can only attribute to the reality of a life altered beyond recognition by EC and multiple food allergies. At a recent birthday party, one of his friends was confined to a wheelchair due to an ankle injury and M immediately stepped in to make sure this friend could be as involved as possible, despite the constraints of the wheelchair. He took the time to push his friend around the garden so he could join in the activities and toasted marshmallows on the camp-fire for him, even though he wasn’t able to eat them himself. Likewise, another good friend has just been switched to a gluten-free diet and M has made sure he sits with him during lunchtimes at school to discuss the different foods that C has been trying. The parent of this friend rocked my world nearly 3 years ago by inviting M home for tea and being willing to cook to suit his complicated needs, not just that one time, but numerous times since. It feels rather wonderful to know that my boy is now returning that favour and giving this friend the chance to vent about his new diet.

I don’t know what the next few months will bring and the opportunities to offer support may start to dwindle, but there’s one thing I know for sure, as a family we will all continue to reach out and help out whenever we can.

reach-out

The Sunday Roast

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It seems to be one of those dishes that is quintessentially British and yet its exact origins are not exactly clear. First published in recipe books dating back to the early 1700s, over the last 300-odd years it has become a key component of the Sunday roast, especially when that roast joint is beef.  roast-beef-hero-006b0a8d-916f-4b1e-bffe-b6f00c34b96d-0-472x310Beef is actually the next on our hit-list of foods to trial with M, but when this recipe for vegan Yorkshire puddings caught my eye, posted somewhere that I can’t quite remember, I knew that, inclusion of beef or not, adapting this to a M-friendly version was high on my list of priorities.

Despite numerous food challenges over the last few months, we haven’t been able to find a new safe food for M to enjoy since last August, when pear became lucky number 5. The monotony of only being able to eat the same 5 foods day in, day out has understandably taken its toll on his spirit and it has become something of a life’s mission for me to create new and varied ways of preparing those foods to help him enjoy them as much as possible. That aim has resulted in the absolute flurry of new recipes that has hit my blog over the last few weeks and which will continue to do so, until no stone is left unturned from a culinary point of view.

IMG_0263[1]The recipe was surprisingly easy to adapt and delightfully successful in its bake. M and G had no idea what I was preparing to accompany our Easter lunch and despite some optimistic guesses of chocolate pancakes from M, neither child got close with their hunches. As ever, I was slightly nervous until they took the first bite, but I really didn’t need to worry. My batch of 12 quickly dwindled down to 3 – well Mike and I had 2 each too, just to taste test you understand – and M declared them a hit. He took great pleasure in stuffing each pudding with some of his seasoned rice, which actually led to Monday night’s dinner of the remaining 3 puddings stuffed with rice, chicken and a home-made and M-friendly dressing. The greatest pleasure for me was being able to turn yet another popular dish into a M-friendly equivalent and know that his EGID and food allergies have been driven into the background once again.

When inspiration strikes

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With the busy-ness of March almost behind me and M trialling cocoa, and therefore dairy-free chocolate, over Easter, you’d have thought that it was definitely time for me to take a step back and relax a little over the long weekend. However, as I’ve found so many times in the past, when inspiration strikes, I just have to respond as quickly as possible or lose the opportunity to act. Call it providence if you will, but the stars most certainly appeared to align on Thursday with the perfect timing of Easter, a different food challenge and a tempting photo on Facebook. It all started when a lovely friend from my Thursday choir shared a photo of the delicious-looking hot cross buns and Easter biscuits she had baked on Thursday. 20140418_154823I made some MEWS-free Easter biscuits a couple of years ago, but I’ve never attempted baking hot cross buns before, so you might wonder, given the complexity of M’s current restricted diet, why I would even begin to contemplate trying to now.

Whether it was the realisation that last week’s food challenge of grapes meant I could possibly create a bake that bore more than a passing resemblance to the “real” product itself, or the addictive sense of achievement that I get when I see the pleasure on M and G’s faces from the taste of something they haven’t enjoyed for a long time, I don’t know, but either way, hot cross buns made in a M-friendly fashion seemed to be a sensible use of my time on Good Friday afternoon – or at least, they did when I was lying awake thinking about it in the early hours of Friday morning itself.

Thanks to the amazing Nathalie of the Intolerant Gourmand blog, I had a fantastic starting point for my hot cross buns recipe. Nathalie’s recipe already replaces some of the main allergens, but M’s list of safe foods meant that I needed to make some more all important tweaks to produce a recipe that would be fine for him to eat. The hardest adaptation for me was replacing the yeast as obviously that’s what gives the bun it’s bread-like texture. IMG_0256[1]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.

The dough was surprisingly easy to make and came together really well. I carefully added the cross to the top of the finished buns, popped them into the oven and then spent the next 20 minutes distracting M from what was baking. The end result was not quite as springy as a typical bread dough, rather being a little more like scones, but despite that, the flavours were all Easter and really reminiscent of that popular seasonal treat. I can’t remember the last time that M was able to enjoy a hot cross bun, which probably explains the time it took for him to realise exactly what I had baked – it took me pointing out the cross on top for him to work it out! However, both children enjoyed them and I have to confess to be quietly satisfied with the final bake when I tasted one for myself. Sadly, grapes have not proved to be a resounding success for M, but I’m glad that, when inspiration struck, I took the opportunity to bake him something a little different to eat before reaching that conclusion.

Limping towards the Finish line

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bucket listDo you remember that long, long list of things that I was facing at the beginning of March? With the month-end in sight, I am, quite literally, limping towards the finish line, just thankful that the long Easter weekend ahead means the opportunity for some much-needed lie-ins and down-time; but how did March go in then end?

World book day and required costume x 1 – M decided on what can only be described as something of a left-field choice for your average 9 year-old and dressed up as Ford Prefect from Douglas Adams’ well-loved trilogy of 5 books, “The Hitchhiker’s Guide to the Galaxy“. It was one of the easiest costumes he’s ever asked me to make and to our delight, he won a £5 book token for the best WBD costume in his class.'Oh yes we're very proud of him. He's in publishing you know!'

Parents evenings x 2 – Both evenings went extremely well and we are so proud of the strides both children have made during this school year. M has been working hard at beating the challenges of his dyslexia and dyspraxia and is developing some beautiful handwriting when he remembers to try. G has settled well into Year 7 and was described to me as a “conscientious, hard-working, empathetic and focused” member of her tutor group. I was delighted to hear that her confidence has grown throughout the year and that she is developing into a well-respected and natural leader amongst her peers too.

School book fairs x 2 – Attended and books bought.

M-friendly croissants – Recipe adapted, croissants baked and hugely enjoyed as part of the school’s French role-play activity. I achieved above and beyond what I thought was possible with so little notice.

Mothers Day – We enjoyed a quiet day together, although sadly my Mum was unwell and not able to come out for lunch with us. We ate at one of our favourite M-friendly restaurants and were once again impressed by the phenomenal memory of the restaurant manager and the care awarded to both children by all the staff. Well done Wagamama!

Riding lessons – G continues to ride every other weekend and her passion for this hobby is growing. Her latest lesson saw her not only trotting and cantering with confidence, but beginning some preparatory steps to get her ready for jumping – scary stuff but she’s loving every moment.

A 10th birthday and a class assembly – These happened on the same day and were both celebrated in style. It’s hard to believe that my little bean has reached the end of his first decade and I can’t begin to imagine what the next one will hold.IMG_1765

Birthday celebrations – M chose a reptile-themed birthday party and I braved holding a tarantula to help encourage G to beat her fears and do it herself. We combined the day into a double celebration and headed out to a local trampoline park in the afternoon with a couple of friends for a belated marking of G’s 12th birthday too.

Dentist and hair appointments – These both happened as planned and really there’s not much more to say.

GOSH appointment – Mike, M and I headed to London for our first appointment at GOSH since the disastrous admission last December. We weren’t quite sure what to expect, not least because the gastro department is currently in a state of great upheaval. M is doing well, even though we haven’t managed to introduce any more foods safely into his diet since last summer and continues to impress us all by drinking the 400mls of E028 necessary to supplement his limited repertoire of food. His weight has dropped on the centile charts and will need some careful monitoring over the next few months as we continue to search for some more safe foods for him. There is, at long last, a chance of some shared care between GOSH and our local gastro team, which would add some much-needed local level support for our family and the next step is really to wait and see when and if that happens.

School play – Thankfully M’s role as Poseidon meant that I could re-use his toga from Stagecoach last year, so that was one costume crisis off my hands. He was only able to take part in one performance as the matinée was on the same day as his GOSH appointment and unfortunately I wasn’t able to see his evening performance as it clashed with G’s parents evening. However, Mike and G went to watch and told me it was great fun and he did really well.

Performing Arts Exams x 2 – Taken by one very-tired G and one determined-to-do-well M. We won’t know just how well they’ve done until mid-April, but I’m told that they both worked hard and performed well on the day. Having watched their performances the week before, I can’t wait to see if all their efforts paid off and are reflected in their marks.index

Spa day – This was a late birthday celebration, a treat that Mike had sorted out for me and my dear friend, and M’s godmother, L. We had a lovely afternoon being pampered, drinking coffee and chatting without interruption by small people, before enjoying a delicious dinner and a few bubbles to mark the day.

Events linked to school topics – This term M’s topic has been India and part of the school experience was to share an Indian meal from a local restaurant. Thanks to previous experience from G’s time in Year 5, I had been anticipating this one for months and a few mini trials of herbs and spices meant that I’ve been able to create a curry-esque meal that’s suitable for M. A mix of cumin, coriander, ginger and rosemary combined with our new discovery of rice cream created the sauce for his staples of chicken and rice. It might not be an authentic dish, but he loves it and it’s meant that he has been able to join in a meal with the rest of his class.

Preparations for G’s sibling camp – I haven’t quite started on this one, but the weekend’s going to be busy as G goes off to camp on Monday. She’s been looking at the list of things she needs and chatting to a friend via e-mail as she prepares for a week filled with fun and activities away from the hustle and bustle of home. She also went to her first Young Carers meeting this week and seemed to settle in really well. There are some other girls the same age as G, including one from her school, who have just started too and she’s looking forward to an afternoon at a local trampoline park during the Easter holidays. Watch this space for more of an update once she’s back and has shared all the news with me!

Easter – Preparations are sorted, food trials are planned, eggs have been bought and I’m looking forward to a peaceful family weekend at home.

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Happy Easter!

 

Best food trial EVER – and just in time for Easter!

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I don’t know what it’s like in your house, but Easter is always one of those celebrations that creeps up and takes me by surprise. I suspect that the general busy-ness of the 6 weeks beforehand plays a big part in my seeming inability to effectively organise for it. Every year I say I’ll be sorted and every year I fail miserably. When you consider the steady pace of events through our household this year: from Shrove Tuesday’s pancakes to Valentines Day, my birthday swiftly followed by M’s 10th and Mothers Day thrown into the mix for good measure, there’s no wonder that having finally paused for a much-needed breath, I’ve once again almost let Easter pass us by,

In previous years both M and G have been able to enjoy dairy- and soya-free Easter eggs, 20150402_183827although 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 plastic eggs and an accompaniment of non-edible treats. Thanks to some strategic conversations with M’s dietician and some canny planning on my part, Easter 2016 is promising to be a much more exciting time for him as we’ve timed to perfection his next food challenge: cocoa and dairy-free chocolate!

M is now counting down to when he can start this food trial and I’ve been frantically exploring the free from market as, believe it or not, there have been some exciting new ventures in the dairy- and soya-free chocolate world that we’ve yet to discover. Here I’ve decided to share some of the great options available for those of you looking for a fantastic dairy-free Easter chocolate treat and hope that you’re able to find the perfect one for you.

Please note: Due to M’s previously identified hypersensitivity, we are avoiding soya lecithin as well as dairy and soya, but not all of these products use an alternative, so I’ve listed any “may contains” listed by the manufacturer.

Plamil Foods – This is a brand that I’ve seen, but knew very little about. easter-eggs-xlThey 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 Easter products include a variety of Easter Bunny bars and bags of half chocolate eggs as well as the more traditional hollow eggs.


Moo Free Chocolate – We’ve been big fans of Moo-free chocolate for a long-time, not least because they were one of the first dairy-free brands that I discovered that used sunflower lecithin, making them really safe for M. As well as their ever available chocolate bars, they are selling hollow Easter eggs in 3 flavours: moo-free-3-eggs-diagonal-web-mediumOriginal, Bunnycomb and Orange.

  • Dairy-, gluten-, lactose-, casein- and wheat-free. Also vegetarian and vegan
  • Uses sunflower lecithin
  • *May contain traces of hazelnuts
  • Available from a number of stockists including Sainsburys, Waitrose and Holland & Barrett. For a full list, click here
  • Prices from £4.00 to £4.99
  • G’s mark out of 10: 10/10

 

D&D Chocolates – This is a new brand to the whole family and I was lucky enough to have a taste at the recent #FFFA16 judging days I attended. As their website shows, they have a whole range of really lovely Easter products from the delightfully named Chuckling bunnies, mini eggs and various felt bags and baskets crammed full of chocolate. choccbunniesHR-bigThey also sell carob products and have a similarly impressive range of those themed for Easter too.

  • Dairy-, nut- and gluten-free. Also vegan
  • Uses sunflower lecithin
  • *May contain traces of soya
  • Available on-line as well as Independent health stores
  • Prices from £2.50 to £29.99
  • G’s mark out of 10: 8.5/10


Cocoa Libre – These are a relative newcomer to the freefrom market, but impressively have been shortlisted at both the #FFFA15 and #FFFA16. When I first saw their products, I got very excited as they are made with Rice Milk, which is clearly labelled on their packaging, but sadly they also include soya lecithin at the moment.This means that they’re not currently suitable for M, though I’ve no doubt that G would love this box of 10 Easter chicks.UfubKWw9Rb4AWzEU3q0Ot-jlK0Y

  • Dairy-, gluten-, wheat- and nuts-free. Also vegan
  • Uses soya lecithin
  • Available on-line as well as a number of small independent stores around the country
  • Prices from £1.95 to £4.95
  • G’s marks out of 10: Unfortunately G didn’t manage to try this one before I published this blog, but the chocolate I tasted at the #FFFA16 earned a 9/10 from me

 

Booja Booja – If you eat dairy-free chocolate and want to be indulged, you need look no further! Booja Booja makes the most decadent and delicious chocolate, which is perhaps far more suitable for the adult taste than for children, though needless to say,
G and M both loved their champagne truffles a few years ago! They have a beautiful selection of Easter eggs in this years collection and I’d be hard pushed to know which to choose.

  • organic as well as dairy-, gluten- and soya-free
  • *May contain nutsboojabooja2
  • Available from stores including Waitrose, Holland & Barrett and Sainsburys. Other stockists can be found on-line here
  • Prices from £9.95
  • G’s marks out of 10: We didn’t try their Easter eggs, but their truffles deserve a richly indulgent 10/10

A Wild 10th birthday!

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This week I’m planning to take a break from any suggestion of a complicated bake – after 3 sets of birthday “cakes” last week and croissants the week before, I really think I deserve it. IMG_1731I have to confess to keeping it simple on the big day itself as M had huge ambitions for the day of his party and so a cake-stand full of rice krispie treats seemed to fit the bill. I did jazz them up a little by splitting the batch in two and adding chopped apple to one half and crystallised ginger to the other. The birthday boy seemed delighted with my choices and with that success firmly under my belt, I moved on to the next phase of my baking challenges for the week: the party cake!

M has been fascinated by the natural world for as long as I can remember, hence the arrival of Leo in our household just after Christmas. He loves watching wildlife programs on television, reading nature-themed books, be they novels or factual, and appears to absorb the facts he hears in a sponge-like fashion, ready to share at any given opportunity. So when Mike suggested a wildlife party for his birthday, M leapt at the chance and immediately asked if I could make a bearded dragon cake for it. I tentatively agreed, with my usual proviso that I couldn’t guarantee anything before the day itself and he would just have to accept it, no matter the end result. I researched and found a company who would bring a selection of reptiles and insects to our party location and would teach the children about each one as well as allowing them to touch and hold them if they wanted. It wasn’t my idea of a perfect birthday treat, but M was hugely enthusiastic and so I booked the party session, having somewhat madly decided to hold it at our house to make life a little easier.

12670399_10153297404071123_3934501200587725837_nParty booked and themed party favours ordered, next came the matter of the cake. For once I decided to learn from previous experiences and didn’t leave decorating the cake to the last moment as I usually do. The prospect of a 2am finish really didn’t appeal, especially if I was battling with creating the perfect bearded dragon cake topper and so planned to start a week earlier, with the hope of finishing at a much more reasonable time the night before. I found some images on-line and, with “Les Miserables” blaring in the background, carefully copied the individual body parts before attempting to put them together. Given Leo’s rather vivid orange skin tones, I chose to make a bright orange dragon and whilst it might not have been the most realistic coloured one, I was thrilled with my crafted copy. I carefully covered and stored it away from peeking eyes, determined that M would be left guessing until the last possible moment.

Fast forward a week and Saturday afternoon found me whipping up a batch of stone grey coconut oil icing to recreate a rock, having already baked a M-friendly pear and apple cake, which was now sitting on a bed of brown sugar “sand”. With icing, dragon and cake now all ready and waiting to be assembled, I turned to the matter of some un-birthday birthday cupcakes for G. As you may remember, for the second year in a row M was in hospital over G’s birthday and we were unable to celebrate the day with her. Last year we held a joint party for them both and had a lot of fun at their Cluedo-themed extravaganza, but I wanted to do something separate for G this year. Taking advantage of our tradition that each child has a friend at the other’s party, 12790894_10153315764351123_4961913402772457111_nwe decided to hold a small event on Sunday afternoon for G and invited her 2 friends to M’s party in the morning as well as 1 of his to hers in the afternoon. Given it was a very much belated birthday celebration, of course we needed more cake and I decided a batch of cupcakes would hit the mark and decorated them with some rather glamorous silver icing and snowflake patterns for my December baby.

10441207_10153315937021123_5876452706470659349_nSunday dawned with the most glorious weather and an anxious countdown to the party starting by M. The 8 boys and 3 girls spent their time racing around our back garden, bouncing on the trampoline and admiring the varied animals that arrived to entertain. M, of course, held all that he was allowed and G beat her fears to hold the tarantula, despite shaking hands and the occasional tear. The cakes were greatly received and M declared my bearded dragon the “best cake ever!”

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“Little pockets of heaven”

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That was G’s description of the amazing Borough 22 doughnuts that I brought back for her from my stint as a judge at the Free From Food Awards 2016 at the beginning of February. I had been impressed with the quality of these delicious allergy-friendly treats when I’d tasted them during the Tea-time treats category of the awards and was delighted to find that my somewhat fussy 12 year-old was showing a similar enthusiasm as soon as the first bite entered her mouth. She’s not usually given to waxing lyrical about anything, so these words constituted high praise indeed and the only disappointment was the look on M’s face which he just couldn’t hide, even whilst masterfully trying to celebrate his sister’s excitement with her. It was at that point a tiny seed of inspiration started to sprout and I soon had a cunning plan up my sleeve which I was determined to pull off if at all possible.

My hope was based on the comprehensive ingredients list found on Borough 22’s website and these promising words “We use the following ingredients which, where possible, can be substituted if you have an intolerance to them or are vegan/ vegetarian/ lifestyle conscious…if there are any that don’t agree with you then please let us know. Because we bake to order in small batches we will try our very best to substitute it for something that you can have!” Hardly pausing for breath and most definitely with every part of my body tightly crossly, I penned a quick email to ask if there was any possibility of a doughnut recipe that would cater for M’s particular and restrictive food requirements, stressing that I completely understood that this might be a challenge too far. I included my review from the #FFFA16, told them just how thrilled G had been to taste their doughnuts and then sat back to nervously wait a response. The return email, when it came, led to a lengthy phone-call, a flurry of e-mails and the development of what is rapidly growing into a great new friendship.

IMG_3397Ryan Panchoo, owner of Borough 22, is a truly inspirational man, who had a vision and didn’t just make it a reality for himself and his family, but chose to share it with the greater food allergy community too. It all started with the observations of his food-allergic wife and children that restaurant desserts were usually fruit or sorbet and lacking in quality and imagination, and the dream to create one dessert for everyone; something that tasted great, was of a great quality and that initially was both gluten- and dairy-free. He started with chocolate brownies, created a recipe that received the thumbs-up from family and friends alike and could then quite easily have stopped there. However, in a move that I feel really reflects his determined nature, Ryan decided to experiment with doughnuts and despite never having baked one before in his life, researched and tweaked recipes until his multiple allergen-friendly and delicious treat was perfected.

Ryan tells me that his ambition was never to sell his brownies or doughnuts, instead he simply wanted to be able to enjoy safe sweet treats at home with his family; but his friends had a different idea and in October 2014, Borough 22 was launched. It really is in the tradition of the very best “rags-to-riches” fairy stories to learn that he has never invested millions in some snazzy marketing campaign, instead depending on personal recommendations and his use of social media to spread the word. 12694884_571032356387193_4099041063554217609_oHis colourful and eye-catching Instagram photographs led to a situation that he willingly admits was surreal, when he found himself sitting in a meeting with a buyer for Selfridges, discussing exactly what he needed to do to sell in their prestigious food hall and, even more impressively, how they could help him achieve it.

Nearly 18 months on, Borough 22 is a flourishing business, who sells its wares in several outlets in South East London (The Plumstead Pantry & Good Food Catford) as well as through mail-order via their website. The business with Selfridges is currently on hold as Ryan searches for a suitable manufacturing partner to help him meet demand as he still works full-time as a Project Manager for a property investment company. Once that trickiest of partnerships is settled, the plan is to return to Selfridges and hopefully develop the business even further. 12717848_563378083819287_7037755747881912271_nI’m delighted to be able to share that Borough 22 was also shortlisted in both the “Teatime!” and “Start ups and Small Producers” categories of the #FFFA16, although everyone, Ryan included, will have to wait until the awards ceremony in late April to find out just how well they did. To shortlist once is impressive, twice simply astonishing, but I’m honestly not surprised as this is a product we are more than happy to endorse and recommend to everyone, food allergies or not.

Even better news for the 7Y2D household’s youngest member at least, Ryan agreed to try his best to adapt his recipe and accommodate M’s complicated food allergies. I decided not to mention our plans to M or G until I knew whether it was a possibility or not and even on the day I took delivery, kept quiet until the doughnuts were safely in my hands. However, as those who know me will attest, my excitement on that Friday was impossible to hide and I spent the day counting down the hours until I could pick my pair up from their respective schools and share the news. I captured every precious moment of the “big reveal” not just for posterity’s sake, or for my blog, but most importantly to share with Ryan himself:

I’m not sure that you really need my words to tell you about M’s response as these photos pretty much capture it all. I will tell you that M was left speechless and in tears when he realised these doughnuts were for him. I will confess that as he squeezed me tight and desperately sought to compose himself, I had to swallow down the huge lump in my own throat and wipe away a few stray, but happy tears. I will gladly share M’s own endorsement that Ryan can “…succeed at whatever he bakes Mum, because these doughnuts are almost better than birthdays..!”

Ryan, you may be a full-time project manager by day, but in my little allergy-sufferer’s eyes, you’re a true superhero by night.

Double digits

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And, just like that, the last member of our family has left the years of single digits behind him and has joined the ranks of those celebrating double digit birthdays. As well as celebrating the first decade of M’s life, we’re also marking 10 years of astounding challenges, amazing courage and unbelievable joy. Happy 10th little bean xxx

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“Promise me you’ll always remember: You’re braver than you believe, and stronger than you seem, and smarter than you think.”

The Croissants Adventures: Part Deux

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One of my biggest challenges for last week was set by M’s teacher, when she let me know on the Tuesday that they would be engaging in a spot of French role-play and would be tasting hot chocolate, croissants and other traditional French breakfast foods during the lesson. She was anxious that M shouldn’t feel left out and asked whether there was any chance I could send in something “…M-friendly and close to a pastry…” for the activity. The thing is that there really isn’t anything readily available that is even vaguely similar to a French pastry that is based on M’s handful of safe foods and so I knew this was going to be a baking challenge I needed to tackle and quickly. break05My starting point was actually a conversation with M as there was no need to stress about how to create a French-inspired masterpiece for him, if he’d simply be satisfied with a rice krispie treat instead. We started on the matter of the hot chocolate and despite his desperate bids to start his cocoa trial weeks before Easter, rather than when planned, he quickly changed his tune – well who’d want to miss out on an Easter Egg if it’s up for offer?! – and settled on rice milk flavoured with banana nesquik for his drink. However, he was less open to be swayed on the matter of the croissants and I promised to at least investigate if there was anything I could do before the Friday deadline dawned. Fortunately, 2 years ago the school had hosted a MFL (Modern Foreign Languages) Day and whilst G’s needs were met by the purchase of some delicious Genius pain au chocolat, even then there was nothing I could buy that would suit M’s trickier requirements. I had researched and adapted a great vegan recipe for croissants and baked a batch that kept him happy, even if they were not quite up to my more exacting standards. I knew I had added that recipe to my blog and quickly had a skim-through the list of ingredients to see if a new and improved M-friendly version was even possible.

For once, luck seemed to be on M’s side and, after a quick internet search for possible alternatives to the yeast I’d needed before, I was able to tell my excited child that I was willing to at very least give it a go. With plenty of warnings that there were no guarantees regarding taste or texture, I tentatively started the long and drawn-out process of making the pastry dough. I swapped coconut oil for the Trex and a bicarbonate of soda and xanthum gum mix for the yeast. The dough was prepped on the Tuesday night and I popped it into the fridge for a couple of days until I needed it: that was a big mistake. IMG_0207[1]The coconut oil solidifies at cold temperatures and by the time I was ready to make and bake the croissants on Thursday evening, my pastry was now filled with marble-sized lumps of coconut oil that I just had to remove. Whether this made much of a difference to my final product, I really don’t know, but given that a lot of the flavour in a French pastry comes from the fat added to it, I don’t think I did myself any favours.

I rolled and folded, and folded and rolled for a good 25 minutes on Thursday evening, until my dough was smooth and no longer a sticky mess that couldn’t be worked and I carefully cut triangles and rolled each one into the croissant shape, complete with slight curve. With the excess dough, I formed 2 pastry cases and attempted a couple of apple turnovers as an unexpected treat. Once all my pastries were ready, IMG_0209[1]I popped them into the oven, set the timer and attempted to forget all about them until the bell rang. The turnovers ended up being a little overdone and I wasn’t entirely convinced by the croissants either, though both children devoured them eagerly and with far more gusto than I was expecting!

This morning I was asked by a friend if I was planning to make a third attempt and I didn’t know what exact answer to give. The time and patience needed to make this pastry was tough to fit in alongside the everyday hustle and bustle of our household, but I reaped huge rewards. M and G were delighted with this different treat and I know that with a little more tweaking and a lot more practice, I might end up with a M-friendly pastry that would open up a lot more possibilities for meals for him. Not just croissants or apple turnovers, but chicken pot pies spring to mind too. So my honest answer probably should be:

Just watch this space!

What makes them rare

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February 29th: a special day, an unusual day, a day so rare that it only comes round once every 4 years and, quite frankly, the perfect day to mark Rare Disease Day 2016. This is the opportunity to raise awareness of rare diseases and the impact they have on the people living with them, not just with the general public, but amongst medical professionals and policy-makers too. It initially launched as a European event in 2008 and is now marked in over 80 countries worldwide.

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What is meant by a rare disease? Definitions of “rare” do differ from country to country, but across Europe a disease is considered rare when fewer than 1 in 2,000 people is diagnosed with it. The threshold in the USA is defined as when fewer than 200,000 Americans are diagnosed with that illness at any given time.

How many rare diseases are there? 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.

Who is affected? 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.

Why raise awareness? 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.

What does Rare Disease Day mean to us?

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. stats

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 – but nonetheless, having to live with the reality of this rare disease and its effects on 19686_830453950379123_8588932072036308849_nyour family’s life on a daily basis.

(For those who wonder if EGID is real, try living with anyone who is in the midst of an EGID flare up and, bigger picture or not, you’ll understand why we will continue to fight for research into this unquestionably chronic and life-impacting illness.)

Imagine the heartbreak of holding your sobbing child at 3am, with tears streaming down your own face, as you struggle to find some, any words to bring him a little comfort.

Imagine taking one food after another out of his diet in a hope to bring some relief from the chronic pain and poor bowel function, until you are left with the final realisation that perhaps you need to remove everything and feed him via a tube to see if that is the answer you’ve been seeking for the first 9 years of his life.

And then imagine starting to put foods back in, one at a time, only to discover that his body has allergic reactions to more than you ever thought possible.

Does this sound familiar to you?

This is the reality of the last 3 years of our life with a rare disease as the truth of EGID is that symptoms are complex, understanding is limited and medical research funding scarce. M’s diagnosis with EC makes him rare, so please help raise awareness today, not just about EGID, but of other rare diseases and those living with them too.

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