Tag Archives: EGID

The best laid plans…

Cupcake anyone?

Today is the penultimate day in National Eosinophil Awareness Week and our plans were to raise awareness and funds for FABED at school.  I had approached M and G’s headteacher last week to ask if we could hold a cake sale – and yes, I do realise the irony in that choice – during today’s Sports Day.  He readily agreed and the call went out, letting parents know about our cause and asking for donations of cake, and cash, for the day itself.  However, at around 2am this morning, when I heard the rain pounding down outside the bedroom window, I realised with a sinking heart that there was no chance of Sports Day happening and I would need to agree an alternate plan with the school to get rid of the 100 M-friendly cupcakes that were littering our kitchen. 20140523_152824 Fortunately, school have been fantastically supportive of our fundraising efforts this week and we were able to hold the cake sale at the end of the school day instead. Despite the last minute change to our plans, we raised an amazing £87 for FABED and even managed to hand out some information flyers about EGID to interested parents.  I was encouraged to be told by one parent that she had never heard of EGID before receiving the e-mail about the sale and so had gone on-line to find out more about the condition.  That, for me, has made all our efforts this week worth-while.

10368328_10152062730306123_2476405082926815390_oM and G were also keen to raise awareness with their teachers and late Wednesday evening, I came up with a plan that would get our message out.  Thanks to the generosity of FABED, I had a stash of their pens at home – bright pink and bearing the FABED logo – and, following a hasty head-count of the members of staff in the school, realised that there was enough for every teacher to be given one.  I painstakingly cut out pairs of glasses from “FABED-pink” paper, glued them to hand-made white card tags, inscribed them with the words “I am EGID aware..are you?” and attached the tag to each pen.  The end result was effective and M was delighted to be able to take them in to school with him this morning and hand them out to the teachers.  We had lots of positive feedback as they received their pens from him and I hope that this will encourage them to also find out a little more about EGID.  Knowing that at least 3 teachers have decided to use the FABED pens as their dedicated register pens assures me that it’ll be a constant reminder of EGID and not just a nice thing that happened on the Friday before half-term.  Not content to leave our awareness-raising with just school today, M also took some pens and left-over M-friendly carrot cake cupcakes to Stagecoach tonight for his teachers there to enjoy.  He’s been fab at handing them out today and has grown in confidence about explaining what it’s all about – as long as Mummy’s alongside to lend a helping hand when needed.

20140523_202419On the food front, Mike decided to eat exactly the same food as M today, matching him mouthful for mouthful, even down to the obligatory serving of Neocate at the end of the day.  I chose not to do the same this year as M has been off his food this week due to his flare and I need to keep my carbohydrate intake up to keep my T1D on an even keel, although I too have endured enjoyed a glass of Neocate!

M

Me

Mike

Breakfast
  •  Sliced pear
  • Black coffee
Lunch
  • Sakata rice crackers (4)
  • Free from spread
  • Fruit stars
  • Sesame snaps
  • Orgran Mini chocolate Outback biscuits

 

  • Rice flour toast (3 slices)
  • Smoked salmon trimmings mixed with cucumber, tomato and egg-free mayonnaise

 

  • Sakata rice crackers (4)
  • Free from spread
  • Fruit stars
  • Sesame snaps
  • Orgran Mini chocolate Outback biscuits


Dinner
  •  4 tbsp Risotto (Arborio rice, onion, garlic, bacon, courgette, mushroom, corn & vegetable stock)
  • 150mls rice milk
  •  Risotto (Arborio rice, onion, garlic, bacon, courgette, mushroom, corn & vegetable stock)


  •  4 tbsp Risotto (Arborio rice, onion, garlic, bacon, courgette, mushroom, corn & vegetable stock)
  • 150mls rice milk


Snacks
  • Carrot cake cupcake
  • Nakd Cocoa Orange Date bar
  • 1x 350mls Neocate Active flavoured with Crusha strawberry milkshake syrup
  •  1x 350mls Neocate Active flavoured with Crusha strawberry milkshake syrup
  •  Carrot cake cupcake
  • Nakd Pecan Pie Date bar
  • 1x 350mls Neocate Active flavoured with Crusha strawberry milkshake syrup

If you would like to donate to FABED and the wonderful work they do supporting families like ours coping with children with EGID, please see their JustGiving page at https://www.justgiving.com/FABED/

 

Medicines galore!

M's daily batch of medicines

M’s daily batch of medicines

Today’s post was going to be a relatively short one.  One to just give you a glimpse of the amount of medicine M takes every day.  One to raise your awareness of the medical impact of this condition; but the thing is, taking 9 medicines on a daily basis is never going to be a short story, even though compared to some EGID children, this isn’t necessarily a lot.  M does a great job of taking his daily doses and has moved on from last summer’s need for Grandma’s jam to being grown-up enough to take his capsules the “adult” way, sometimes even swallowing both of his lunch tablets at the same time – something I don’t think I could do.  I’m also going to attempt to explain what each medicine does and why he takes it, but keep in mind that I’m no medic and so my knowledge is that of an EGID Mum, nothing more.

Medicine Dose When taken Why?
Calcichew D3 1 tablet
  • Breakfast

 

A calcium supplement to ensure calcium intake is sufficient to protect bones due to malabsorption issues
Movicol 1 sachet mixed with 65mls milk
  • Breakfast
An osmotic laxative, which means that they relieve constipation by drawing water into the bowel to soften stools. Used to ensure M doesn’t get impacted again and we can adjust the dose as we need
Cetirizine 5mls
  • Breakfast
  • Dinner
This is an anti-histamine and is used to reduce or relieve the symptoms of an allergic reaction.   Typically used to help skin reactions and hayfever.
Ketotifen (Zaditen) 5mls
  • Breakfast
  • Dinner
This is an anti-histamine and is used to reduce or relieve the symptoms of an allergic reaction. Typically used to help symptoms of allergic rhinitis.
Nalcrom (Sodium cromoglicate) 1 capsule
  • Breakfast
  • Lunch
  • Dinner
  • Before bed
An anti-allergy medicine specifically used to prevent the symptoms of food allergy. It works to prevent the allergic reaction happening when food is eaten
Lansoprazole 1 capsule
  • Lunch
A Proton pump inhibitor (PPI) used to reduce the amount of acid produced by the lining of the stomach when digesting food and thereby reducing acid reflux
Senokot 5mls
  • Dinner
A stimulant laxative used to encourage the muscles of the bowel to move the stools through the body and prevent constipation. Again, we are able to adjust the dose as M needs
Neocate Active 1 sachet mixed with 300mls water
  • Evening
An elemental feed that contains amino acids, carbohydrate, fat, vitamins and minerals. Used to provide dietary supplementation for children with multiple food allergies. In M’s case, we believe that this is what helps him maintain his weight
VSL #3 Probiotic 1 sachet mixed into his Neocate
  • Evening
A probiotic supplement frequently used in patients with Inflammatory Bowel Disease (IBD). It works by forming a protective barrier on the walls of the GI tract

sweetsAs well as keeping on top of all that and making sure M has the right medicines in the right doses at the right times, we also have to make sure he’s eating well and nothing creeps into his diet that shouldn’t.  Tonight was “Film night” at school and I was the parent standing at the tuck shop, scanning the ingredients of each and every item being sold to check what was and wasn’t M-friendly!  In comparison, our meals today were a lot easier:

M

Me

Mike

Breakfast
  • Milk (200mls)
  •  Sliced pear
Bowl of:

  • Free-from cornflakes
  • Rice milk
Lunch
  • Sakata rice crackers (2)
  • Fruit stars

 

  • Sakata rice crackers (6)
  • Peanut butter
  • Celery
  • Orange

 

  •  Sakata rice crackers (10)
  • Peanut butter
  • Orange
  • Apple
Dinner
  • Chicken and bacon pasta (Glutafin corn pasta twirls, bacon, cucumber, carrot, corn, coconut cream and egg-free mayonnaise)

 

  • Chicken and bacon pasta (Glutafin corn pasta twirls, bacon, cucumber, carrot, corn, courgette, mushrooms, tomato, coconut cream and egg-free mayonnaise)
  • Chicken and bacon pasta (Glutafin corn pasta twirls, bacon, cucumber, carrot, courgette, mushroom, tomato, corn, coconut cream and egg-free mayonnaise)


Snacks
  • Sliced pear (1/4)
  • Nakd cocoa orange date bar
  • Dried apricots (3)
  • Sakata rice crackers (2)
  • Peanut butter
  • Sweets
 
  •  Carrot cake cupcake

 

Lessons about the Press

My foray into the world of the local press over the last week has taught me some interesting life lessons.  Last week was all about my appearance on our local BBC radio station to talk about EGID, National Eosinophilic Awareness Week and baking for a child with multiple food allergies.  I had some great feedback from people who’d listened to what I had to say and thoroughly enjoyed the experience.  The pros were all about getting that message out there and raising some much needed awareness about this rare condition. The cons were that I didn’t know what I was going to be asked beforehand as it was all completely unscripted and so missed giving some information that would, in my opinion, have made the interview even better.

Today an article featuring our family appeared in our local paper.  The interview hadn’t been the easiest as I took the phone-call at work and could be spotted standing on one leg about 10 feet from the front of the office, with my left hand raised in the air in a vain attempt to get a decent enough signal to be heard at the other end – well maybe not really, but you get the picture!  I don’t find explaining EGID the easiest thing in the world when sitting face to face with the person asking the question: there’s a tendency for the individual to begin to glaze over, right up until I mention that M struggles with multiple food allergies as part of his condition.  At that point, their interest sparks up again as everybody inevitably knows somebody who can’t eat wheat/gluten/dairy* (*delete as appropriate).  Now, imagine trying to discuss a rare and virtually unknown condition over the idiosyncrasies of the mobile phone network – nigh on impossible.

NST (2)

However, despite it all, I’m not disappointed with the article that was written.  Okay, so the headline was misleading given our actual aim is to raise some much needed awareness about EGID rather than food allergies, but the reporter did include lots of important and accurate information.  I was delighted that she included some words about FABED, without whom I doubt I’d have found the confidence to even approach the press to report about M, as this was the bit that was missing from my radio interview on Friday.  To my delight, the paper has also agreed to run a small follow-up piece next week about our fundraising efforts this week and report how much money we have managed to raise for FABED.  That will be my opportunity to include FABED’s website details and to encourage our community to consider supporting this worthy cause.

feetup

With all the excitement of 2 appearances in the local press within the space of a week, this media mogul decided she needed a break of the mundane task of family dinner and instead tonight’s menu was courtesy of Mike:

 

M

Me

Mike

Breakfast
  • Home-made bread (1 slice) with free-from spread
  •  Sliced pear
Bowl of:

  • Free-from cornflakes
  • Rice milk
Lunch
  • Sesame snaps
  • Fruit buttons (blackcurrant)
  • Chocolate cupcake (1/3)
  • Home-made rice bread (1 slice)

 

  • Sakata rice crackers (6)
  • Cucumber
  • Celery
  • Peanut butter

 

  •  Brazil nut & sultana cereal bar (2)
  • Mango fruit smoothie
  • Apple
Dinner
  • 2x home-made rice bread (toasted)
  • Baked beans
  • Pears (1/4)

 

  • Taco shells (4)
  • Home-made chicken satay (chicken, onion, garlic, courgette, mushrooms, tomato, peanut butter, coconut cream, chilli flakes)
  • Home-made coleslaw (red cabbage, carrot, onion, egg-free mayonnaise)
  • Taco shells (4)
  • Home-made chicken satay (chicken, onion, garlic, courgette, mushrooms, tomato, peanut butter, coconut cream, chilli flakes)
  • Home-made coleslaw (red cabbage, carrot, onion, egg-free mayonnaise)
Snacks
  • Sliced pear (1/4)
  • Nakd cocoa orange date bar
  • Dried apricots (3)
  • Sakata rice crackers (2)
  • Peanut butter
 

 

 

M’s Daily Bread

When our journey to reaching a diagnosis for M started at GOSH 3 years ago, we never could have imagined how radically his life, or ours, would be changed.  It was incredibly difficult to remove so many things from his diet and I will never know how our amazing 5 year-old accepted this new way of life with so little resistance.  Over the past 3 years I’ve spent a lot of time developing recipes to allow both G and M to enjoy the same sort of treats as their friends, be it traybakes, cakes or biscuits, all with varying success; but the one thing I’m yet to perfect is bread.

G is able to eat the wonderful Genius bread, which we discovered back in 2009 when she had the most difficult diet in the family, being wheat-, dairy- and oats-free.  That discovery made a big difference to her life at the time and we were once again able to easily enjoy picnics and packed lunches without G feeling like the odd one out.  Unfortunately, M has not been so lucky.  Genius bread contains egg, which is still a no-go for M despite 3 attempts to re-introduce it into his diet, and also potato starch.  Instead, he is left with the dubious pleasure of Ener-G brown rice bread, which really is only just about edible when toasted and, I suspect, only then because there isn’t a good alternative.

I have attempted a couple of bread recipes, but have never really ended up with a loaf that M has enjoyed enough for me to make again.  As I unexpectedly have him at home from school due to his tummy bug and the resultant flare, I thought we’d spend some time in the kitchen and attempt this most recent bread recipe which I discovered on the Doves Farm website.  I had all the ingredients in the cupboard, so we found everything we needed, washed our hands and started baking.  M enjoyed weighing and measuring the ingredients out and it was a great opportunity for him to practice his reading skills without really realising it.  Everything looked good when it went into the baking tin, though M was not impressed by the 90 minutes proving it needed or the fact that it would then take a further hour to bake.

The best rice flour bread!

The best rice flour bread!

The end result was simply spectacular.  The loaf had an amazing crust, the dough was cooked through and the grainy nature I’ve come to fear in anything baked with rice flour was not overly apparent.  The smell of fresh bread baking has been missing from our house for a while and it’s fab to know it will be making a reappearance on a regular basis.  G and M had a warm piece of bread each, straight from the oven and covered with a generous lashing of their free-from spread.  Their verdict?  Delicious!

 

Today saw a small return to M’s depleted appetite, so hopefully he’s on the mend and will back to his bubbly self soon enough:

M

Me

Mike

Breakfast
  • Smoothie (1/2 banana, 5 strawberries, 200mls rice milk)
  •  Orange
Bowl of:

  • Free-from cornflakes
  • Rice milk
Lunch
  • Sakata rice crackers (4)
  • Free-from spread
  • Fruit string

 

  • Sakata rice crackers (6)
  • Cucumber
  • Celery
  • Peanut butter
  • Sliced pear

 

  •  Left-over chicken casserole and rice
Dinner
  • 4x sweet potato wedges
  • Pork belly slice (1/2)
  • Cucumber
  • Apple (1/3)

 

  •  Sweet potato wedges
  • Pork belly slices (2)
  • Courgettes
  • Mushrooms
  •   Sweet potato wedges
  • Pork belly slices (2)
  • Courgettes
  • Mushrooms
Snacks
  • Fruit buttons (blackcurrant)
  • Capri sun orange drink
  • Brazil & Sultana bar (1/2)
  • Rice bread (1 slice)
 

Quiet day

After the excitement of an early start to our awareness week at the end of last week and the unexpected challenge of a sickness bug for poor M on Friday night, we had something of a quieter day today.  Mike and I both have some dietary challenges to face in the week ahead and Mike’s started today with a business trip, which needed some very careful and canny purchasing of lunch whilst he was out on the road.  He was reasonably successful, though he found the choices extremely limited, especially given the further restrictions to M’s diet over the last year and the prices higher for the few items he could choose to eat.

One of the things we’ve been encouraging M to do since his diagnosis, is to develop the confidence and skill to explain a little about his condition and share information about his food allergies with new acquaintances.  During this past week, I have been proud to discover that he has been doing this and doing a pretty good job of it, all things considered.  He has been able to give an explanation that has partly explained his food allergies and, in both cases, the Mums he’s been chatting to have been comfortable enough to approach me and ask more questions about EGID.  There is an alarming lack of knowledge and information concerning EGID, but this wonderful information flyer, produced by FABED, gives an easy-to-understand explanation of what is a complex condition:

NEAW_Flyer-page-0

 

And, just to finish today’s blog post, here’s our meals for the day.  As you can see, M is struggling with a poor appetite because of the bug, so getting anything into him is a win right now, however small it is:

 

M

Me

Mike

Breakfast
  • Banana (1/4)
  •  Sliced pear
Bowl of:

  • Free-from cornflakes
  • Rice milk
Lunch
  • Nakd Berry Delight date bar

 

 

  • “Chicken on a stick”
  • Eat Natural Brazil & Sultana bar (2)
  • Apple
  • Banana
Dinner
  • Orgran Mini Outback chocolate animals
  • Smoothie (1/2 banana, 4 strawberries, 100mls rice milk)

 

  • Rice
  • Home-made chicken casserole (onion, garlic, chicken, mushrooms, courgette, carrot, corn, tomato, coconut cream, chicken stock)
  • Rice
  • Home-made chicken casserole (onion, garlic, chicken, mushrooms, courgette, carrot, corn, tomato, coconut cream, chicken stock) 

 

Snacks
  • Fruit buttons (apple)
 
  •  Blueberry smoothie

An early start to Awareness week

local_radio_graphicNational Eosinophilic Awareness Week started today, but my bid to raise awareness of this rare condition in fact started on Friday afternoon.  Last year, Mike and I looked to raise awareness amongst our work colleagues, so my plans for this year obviously had to be bigger and better and I started by e-mailing the local press to see if anyone would be interested in running our story.  To my delight, late last Wednesday I was invited to appear on our local BBC radio station to talk about M, EGID and coping with the daily battles we have to face, including cooking for a child with multiple food allergies.  I accepted the offer and Friday afternoon saw me heading into the BBC building with a batch of freshly baked M-friendly cupcakes to share with the presenter and other guests.

 

10348778_10152049176741123_2166202480088495019_oThe cakes were well received, even by the security guards, who were keen to find out more about why I was bringing the cakes into the studio and enjoyed the M-friendly treats I left with them after the show. It was an amazing experience and I can’t thank our local radio enough for giving me the opportunity to get the message about EGID out into our community.  I was able to share, both on and off air, a little about the challenges those of us living with EGID have to deal with and the prognosis for M and children like him.

But, our Awareness week activities don’t stop there.  This time last year, I wrote about our decision to “eat like M” during the week:  one year on and we’re repeating the experience, although we have the added challenge of dropping raisins, raspberries and potatoes out of the diet too.  Actually, this isn’t as tough for me as it is for Mike – I’m not a big fan of raisins and can’t eat potatoes at all due to my own intolerance to them.  We have some more awareness-raising events planned for the week ahead, but for now, I’ll leave you with our meals for the day:

M

Me

Mike

Breakfast
  •  Sliced pear
Bowl of:

  • Free-from cornflakes
  • Free=from rice pops
  • Rice milk
Lunch
  • Roast chicken
  • Sweet potato wedges
  • Corn
  • Peas
  • Carrots
  • Roast parsnips
  • Really not dairy mayonnaise



  • Roast chicken
  • Sweet potato wedges
  • Corn
  • Peas
  • Carrots
  • Roast parsnips
  • Really not dairy garlic mayonnaise
Dinner
  • Rice bread toast (2)
  • Peanut butter
  • Orgran tinned spaghetti
  • Apple (1/2)
  • Cucumber

 

  • Corn tortilla chips
  • Home-made tomato salsa (Tinned tomatoes, onion, garlic, chilli flakes, chilli powder, olives, corn)
  • Home-made cucumber raita (coconut cream, chopped cucumber, chilli flakes)


  • Corn tortilla chips
  • Home-made tomato salsa (Tinned tomatoes, onion, garlic, chilli flakes, chilli powder, olives, corn)
  • Home-made cucumber raita (coconut cream, chopped cucumber, chilli flakes)

 

Snacks

 

 
  •  Dried apricots

Eosinophilic Awareness Week 18th-24th May 2014

This week I’m delighted to welcome Kate from The Recipe Resource as my guest blogger. Her blog was set up to support those catering for multiple food allergies, particularly in children and Kate is a fellow EGID Mum, who I’ve been privileged to meet through the fantastic FABED.  I was going to write a post to tell you all about Eosinophilic Awareness Week, but found Kate had already done an amazing job on her own blog and she kindly agreed to let me share it with you all:

 

18th-24th May 2014 is Eosinophilic Awareness Week.  Read about EGID here

Gastro research is drastically UNDER FUNDED.  It is not “glamorous” and rarely on the radar for celebrities and focus groups, and rarely attracts public interest unlike cardiac care and cancer research.  Gastro conditions are badly neglected in the UK when it comes to research funding allocation, but without research treatment and outcomes are not likely to improve much.

Approximately 1% of the total amount of medical research funding available in the UK can be accessed for Gastro research.  There are currently no listed projects specifically for Eosinophilic Disorders on the National Research database.  GOSH are running a Gastro Research Project that will include related conditions/problems.  Alarmingly, children with allergic gut conditions are reaching epidemic proportions according to GOSH.

No one knows why the UK has the highest incidence for Allergy.  I went to Westmnister to attend the All Party Group for Allergy in October 2013 and heard how in the 19th Century, a study into Hay Fever took two decades as it was so rare and there were insufficient people to include in the study.  Today it is incredibly common.  The UK tops the league table in the incidence of allergy in its population, with Australia second – which is interesting as their population obviously share a similar root.  Allergic gut conditions are becoming common and hugely problematic for NHS paediatric services and Eosinophilic Disease is a specific subset of this group.

FABED is the main UK charity supporting families with members (adult and children) who suffer from eosinophilic disease.

FABED

FABED are UK partners supporting the United States Eosinophilic Awareness Week.  This is coordinated by APFED.  Two years ago they made this video to promote awareness.

Read more about Eosinophilic Diseases here.

During Eosinophilic Awareness Week, do something to raise awareness.  Tell someone about EGID and the appalling lack of funding for gastrointestinal disorders in the UK.

 

This blog was first posted on May 9th 2014 at The Recipe Resource here

Allergy UK Annual Conference

20140428_150922To say that mornings and I do not get along is something of an understatement, and early mornings are the worst.  I am, without a shadow of a doubt, a genuine, bona fide, card-carrying night owl and so anyone who saw me out and about at 6.30am last Saturday, was probably left checking their watches and convinced that something extraordinary was going on. The occasion was Allergy UK‘s first annual conference, being held at St Thomas’ Hospital in London.  I first heard about the event at the start of this year and had been excited about the prospect of finding out more about allergies from the experts attending and presenting at the conference.  The day had been designed to address the needs of individuals and families dealing with allergies on a daily basis and consisted of speeches and workshops as well as open Q&A sessions held during the afternoon.

Professor Peter Howarth of Southampton General Hospital was the keynote speaker for the day.  He opened the conference with a fascinating insight into the on-going and future research that is currently being carried out in the area of allergies and allergic responses. He talked about the recently well-discussed research into peanut allergies, which is looking at whether it is possible to “switch off” the allergic response through regular exposure to peanuts in known sufferers, and whether this approach could be applied to other allergies too.

I was also fascinated to learn from Professor Howarth about the link that appears to exist between Vitamin D and the allergic response.  Studies carried out suggest that Vitamin D can help to reduce the allergic response, particularly in individuals suffering from asthma or urticaria and it is evident that much more research into this area could be extremely beneficial, although there is no funding available for this at the moment.  This is definitely an area I will be keeping an eye on to see if it could be of benefit to M in the future.

Mike and I then attended 2 afternoon sessions, the first of which was a child allergy workshop and proved invaluable, not least because Dr Jo Walsh, who ran the session, explained clearly and concisely the difference between intolerances, IgE allergies and non-IgE allergies.  Her excellent explanation simplified what is a complex and much-misunderstood area and would be an amazingly useful tool when trying to explain M’s food allergies to anyone who comes into contact with him.  She also touched briefly on how to manage the risks to an allergic child out of the home and brought to our attention the NICE guidelines drawn up in 2011, that cover the diagnosis of food allergies and intolerances in children.

The second workshop was run by Dr Helen Brough and was aimed at looking at dealing with allergies with teenagers.  Although this workshop promised a lot, I felt that it didn’t really deliver on our expectations.  The time allowed was just too limited to even begin to touch on what is a complex situation and certainly didn’t really offer any practical tips on how to deal with your teenager and their approach to life with their allergies.  She focussed a lot on the Adolescent allergy clinics they are beginning to introduce, but the time was spent discussing what the parents and teens in the room would like from such clinics, rather than on what is actually provided.

All in all, we were impressed with the day and would be keen to attend another one should Allergy UK decide to hold it again.  There was lots of information available on the day, but I would recommend that the workshop sessions be extended in length as 45 minutes was just not long enough to spend in discussion on such an involving subject.  I will be keeping my ear to the ground to see if Allergy UK run another conference next year and will let you know the minute I hear anything about it.

 

What a performance!

honkM’s love for the performing arts is something I can really relate to, having spent most of my formative years loving nothing more than singing, dancing and acting whenever possible. Both he and G regularly attend our local Stagecoach theatre school and have not only grown in confidence, but have also developed skills that will stand them in good stead in whatever career path they choose to follow.  G is not a natural performer, but her continued hard work, dedication and determination to be the best she can, has seen her win the lead role of “Ugly” in this term’s performance of the musical, “Honk”.  This isn’t a musical I’m familiar with and I’m looking forward to seeing the chosen extract in a few weeks’ time with my daughter in the starring role.  If her enthusiasm is anything to go by, it will be a fantastic experience.

G has also been spending time focusing on her clarinet and has two big events coming up over the next few months.  The first takes place at the end of March and that’s her Grade 1 clarinet exam.  She has been practising at home as well as at school and I delighted that she is confident enough to take the exam.  Secondly, she is once again performing in our local education authority’s music concert, which brings together instrumentalists from across the county to perform at a local music venue.  She loved doing it last year and is looking forward to playing in it soon.  G has had several pieces of music to learn for these occasions, but she’s determined to perform well at both and is working hard at perfecting the music as best she can.

Courtesy of swanwickhall.derbyshire.sch.uk

Courtesy of swanwickhall.derbyshire.sch.uk

M, on the other hand, was born to be on the stage and demonstrates a natural flair and understanding for direction in his classes.  He loves to take any and every opportunity to perform that comes his way.  It provides him with a focus away from his ill-health and he has had to develop a stamina to perform, no matter how his body is behaving.  After all, as we all know, “the show must go on“.  M is passionate about the stage and would love nothing more than a career on it; but he is also surprisingly realistic that not everyone can succeed and has talked extensively about what other opportunities the theatre could offer him in the future.

Over the last few months, two amazing opportunities have come M’s way and it’s been great to see him keen and able to make the most of both of them.  The first was offered by the Ellen Kent Opera Company, who were looking for child extras to be part of two operas they were performing at our local theatre and approached M’s Stagecoach school to find them. M was, unsurprisingly, desperate to be involved and was selected as 1 of 4 children who would perform a special dance during the performance of Aida.  He had 5 half-hour training sessions to learn the routine and the small group then had just one run through on stage with the orchestra on the evening of the performance itself.  We were nervous as to how M would cope with the extra rehearsals, his nerves and the stamina required, especially given how poorly he was in the run up to Christmas; but we needn’t have worried.

IMG_2334

Like the consummate professional he aspires to become, M worked hard, remained focused and gave a fantastic performance on the night.  The prospect of dancing on a “real” stage in front of a full house (approx. 2,000 people) didn’t phase him at all and we were all so proud to see him shine.  He stayed true to his character of a child slave in Ancient Egypt throughout his time on stage and Mike, my Mum and I all commented that we have never seen him remain so still and so focused for so long in his life.  It was our first experience of opera and we all enjoyed it, even G, who has asked to go and see another one in the future.

oliverIn contrast to this professional production, M has also been working on a local am-dram production of hit musical, “Oliver!”.  He is playing the part of “Nipper”, the cheeky youngest member of Fagin’s Gang, a part that, quite frankly, was made for him.  He takes part in every rehearsal with gusto, even though there have been occasions when he has been crying in pain less than 2 hours earlier.  I am amazed at how much M’s determination to succeed in this role has over-ridden any feelings of pain and discomfort that have been haunting him earlier in the day.  He has picked up the songs and dance routines quickly and now, as the final few weeks of rehearsals are ahead, he’s working on perfecting them as much as possible.

I am so proud of both our young performers and am looking forward to watching them doing something that they so obviously enjoy over the next few weeks.

Another birthday celebration

Guess what?

Today marks the first birthday of this blog.

First birthday

It seems unbelievable that I have spent 12 months writing about our experiences over the last 8 years and sharing our struggles, our successes and more than a few recipes to boot.  We’ve had our highs and our lows, but with the support of our family, our friends, medical professionals and other bloggers we know we can keep on going.  When I started the blog I wanted to be able to share the story of M’s life and our fight to get a diagnosis for him and the best care and support we could.  My aim was to raise awareness of this rare and little known condition and I always said that if I managed to make a difference to just one other person who was living our experiences, then I would be more than happy.  Amazingly in the last couple of months, I’ve received kind messages that have told me that I have achieved that goal.

A few statistics to share about the last year:

  • Date of first post:                          March 13th 2013
  • Number of blog posts written:    95
  • Number of “followers”:                297
  • Most popular post:                       To whom it may concern
  • Total views of that post:               220
  • Highest number of hits:               165 in one day
  • Number of recipes shared:          27
  • Most popular recipe:                    The best chocolate cake ever
  • Total number of comments:        218
  • Total number of views:                 7,867

As ever, we’ve no idea what lies ahead for M, for G or for us as a family, but the one thing I do know is that I will continue to share our journey with you and every development as it happens.