Tag Archives: fundraising

The 12 day countdown…

13100674_10153433365696123_5191707647482858646_nIt’s hard to believe that we’re already at the start of May, which means that in just 12 days time, it’ll also be the start of National Eosinophil Awareness Week 2016. For me, every year seems to follow the same pattern:

  • At some point in late February/early March I realise that #NEAW16 is approaching and think I probably ought to do something about it…
  • Mid-March arrives and I finally get round to discussing with M and G what they think we should do this year to raise awareness of EGID and might even make some notes…
  • April begins and I realise that time is flying past far quicker than I imagined it would and begin to mildly panic about getting started on our preparations…
  • End of April and, depending on what I’ve managed to arrange thus far, I suddenly go into full-blown melt-down and panic mode as I realise that the start date is just around the corner and absolutely nothing is ready!

This year has been even more hectic than usual and not just because of the additional efforts needed in coping with M’s broken leg and what looks to be a rather nasty flare-up of his EC as a result of it. Between the children and I, we’ve determined to make this year’s Awareness Week bigger and better than ever before, which meant starting much earlier than usual too. In the past week I’ve organised, arranged and pencilled in dates for various events and whilst some will be happening ahead of May 15th, there are others planned for the week itself. Our current plans include:

  • a stall at our local Scouts’ May Fair, raising awareness and money
  • an article in our local paper all about our plans and an update on where M is a year on since the last Awareness week
  • yet another interview on our local BBC radio station, who are willing and delighted to have me in talking all things EGID for the 3rd year in a row
  • M and G have written, illustrated, filmed and directed a brand new video for #NEAW16, which I will be posting a link to in due course
  • M is in discussions with his Headteacher and is hoping to have display boards up in the school hall or library during #NEAW16. He has also planned some lunchtime games to raise some money for Over The Wall, our chosen charity for this year, and wants to show his presentation during an assembly too
  • a stall at our local market at the end of #NEAW16, again an opportunity to get information out there about EGID as well as fundraising once again
  • Mike, G and I have all committed to “Eating like M” for the week, which is the first time that G has wanted to be fully involved and will require lots of inspirational cooking from me
  • Finally, I have committed to attempting to post a new piece of information about EGID, be that fact, photo or update, via my FB and Twitter feed throughout May – and have given fair warning that I’ll be doing 13124538_1016891105068739_2619415221843487211_nso!

Over the next few days, profile pictures across FB and Twitter will slowly turn purple as those families living with EGID around the world start to raise awareness of this chronic illness. It won’t just be me posting facts and information to share with families and friends about how it impacts on everyday life, but others will be doing it too. So, if you see a post, or a blog, or an update that particularly resonates, either from me or someone else, please share it on and help us reach another person who has perhaps never heard of EGID before.

We have decided to support Over The Wall and their serious fun camps through our fundraising this #NEAW. If you’re able to donate even a very small amount, you can follow this link to my JustGiving Page and help us to help OTW make a difference to another child with a chronic illness and their family.

London: our whistle-stop tour

With our appointment at GOSH over, we then focussed our attention on the activities we’d chosen for the rest of our London stay.  We had narrowed down our choices from the lengthy starting point created by G and M and suggested that each child chose 1 activity each that they really wanted to do on this trip: be that museum, park, art gallery or tourist attraction.  G quickly settled on the Imperial War Museum, M picked the London Eye and Mike and I agreed on booking tickets for a show as well as attempting to complete the amazing “Shaun in the City” sculpture trail.  It was, without question, an ambitious plan, but with some careful planning and the agreement of both children that the amount of walking required would far outweigh the maximum moaning I was prepared to accept, I was confident we might just be able to squeeze it all in.

Imperial War Museum

imperial-war-museum-aburtThis has been on our “hit list” for quite some time, but our previous 2 attempts to visit had both been scuppered by an extended closure to prepare the exhibits marking the centenary of the start of WWI last year.  With nothing to stop our visit this time, we travelled across London via tube and finally convinced our pair to head inside after the requisite hundreds tens of photos had been taken of the impressive naval guns at the front entrance.  G was keen to work her way through the WWI exhibits, whilst M had a yearning for learning more about being a spy and Mike was intent on seeing the Holocaust display.  I had allowed a full day for our visit and we certainly needed it.  There was an incredible mix of posters, photos, short films, interactive displays, war memorabilia and oodles of facts to work our way through and the children were able to dip in and out of the information as they wanted.  We lasted until mid-afternoon before G and M started to flag, interest was lost and we made our way back to the apartment for a little downtime before we headed out for dinner.

The Railway Children – near Waterloo Station

rcIn the run up to our visit, M had spotted an advert for “The Railway Children” and was keen to see the show.  As this was a perfect opportunity to watch a play, rather than the musicals or pantomimes we usually attend, we agreed to get some tickets and had great seats near to the front of the seating area.  M and G loved that the characters came out to talk to the audience before the play started and were enthralled throughout.  I won’t spoil the experience – but it does include a real steam train and the most amazing staging I’ve seen in a long time – and would definitely recommend going to see this fabulous classic if you have the chance.

London Eye

IMG_0746This has quickly become an instantly recognisable icon on the London skyline and is actually something the family has done before.  Every time we head to GOSH for an appointment, M begs for a trip on the Eye and every time I say no, not least because it’s actually nowhere near the hospital and our regular visits are almost always somewhat tight on time.  Having given them free rein to choose one thing they each really wanted to do, it was no surprise that this was M’s selection.  The 30-minute revolution offers spectacular views across London and both children were fascinated with trying to pick out various buildings they knew from the pod.  I was also impressed with the thoughtfulness of the member of staff directing people into the waiting lines.  You can easily end up queuing for around 20-30 minutes, which is never ideal when you have children in tow and definitely not when one of them is sporting a litre feeding bottle and pump on his back.  This lovely lady spotted us in the queue with M and invited us to enter via the fast-track system instead, stating it was “.,just too chilly..” to be standing around waiting.  Of course we all realised that M and his tube were the real reason behind her kind offer, but appreciated her not making a fuss about it and simply offering us an alternative that would make life a lot easier and our experience a lot more fun.

Shaun in the City sculpture trail

Just one of the many Shauns we found

Just one of the many Shauns we found

Yet another sculpture trail to echo a multitude that have been seen across the UK over the past few years, including the Paddington Bear one we dipped into whilst visiting the poppies at the Tower of London last November.  This year’s trail was based on Nick Park’s popular character, “Shaun the Sheep” and featured 50 sculptures, each individually decorated by a host of celebrities, found at strategic locations around the capital.  The sculptures were split into 5 groups – 4 distinct trails and then 5 “lost sheep”, who were not particularly close to any of the other ones – and most were close enough together to allow us to attempt to find nearly 40 of them in one day.  G and M’s aim was to find and be photographed with all 50 before our trip was over and we managed it, though with very little time to spare before we needed to catch our train home.  These London sculptures are only in place until 25th May and then there will be 70 Bristol counterparts during July and August.  Later in 2015, all 120 will be auctioned to raise much-needed funds for children’s hospitals across the UK through Wallace and Gromit’s Children’s charity.  We loved following the map before finding ourselves in parts of London we wouldn’t normally visit and there’s a real camaraderie between fellow Shaun-spotters you come across along the way.  You can find out more about the “Shaun in the City” trail here.

Stomp – Ambassadors Theatre

Our final treat was unplanned, but was definitely a winner.  Every time we travel up, or down, the escalators at tube stations, G and M love to look at the advertising posters that adorn the walls.  If you ever hear cries of “Seen that one…and that one…but we haven’t seen that,..yet!“, then it’s a fairly safe bet that we are somewhere in the vicinity.  Stomp is one of those productions that they’ve been longing to see for quite some time, but we’ve been reluctant to go because G, in particular, doesn’t cope well with loud noises.  Our search for Shaun led us into Leicester Square and the hordes of theatre ticket booths that can be found there.  For those not in the know, these sell last-minute tickets for many of the numerous shows being performed in London at any given time and often represent great value for money due to the discounts they give.  We decided to see if we could get some discounted seats for Stomp and were delighted to have the choice of 4 prime seats on the second row of the circle.  The children were a little shocked to learn that there was no interval in the performance, but were even more surprised at how quickly that 1.5 hours passed notably as they were left wanting more.  The skill of the performers is phenomenal, especially when you realise that you hear no words and no music for the duration of the show, but are totally absorbed by the percussive masterpieces they produce.  Another fantastic show that we’d highly recommend.

We even managed a trek across Tower Bridge on our travels

We even managed a trek across Tower Bridge on our travels

So, it was definitely something of a whistle-stop tour of the capital for us this April, but a great break that we won’t forget for a while.

Just one more dress-up challenge!

20150301_144602These past 2 weeks have been filled with one dress-up day after another for our household. Of course, it all started with the Cluedo party we held to celebrate G and M’s birthdays, where we invited guests to come in optional fancy-dress to match their character if they wanted.  The key word was “optional” as I was well aware that not all of M’s friends are as big a fan of fancy-dress as M is, but we were impressed with the range of costumes that arrived on that Sunday afternoon.  We had “Reverend Green” sporting a dog collar and a striking pair of bottle-green jeans; “Earl Grey” in pinstriped waistcoat, bowler hat and monocle and “Admiral Azure” had a home-made pair of epaulettes that would cause envy in the heart of any member of the armed forces.  Not to be outdone by the costumes of the boys, many of G’s friends joined in, wearing dresses to reflect the glamour of “Mrs Peacock”, “Mrs White” and “Lady Lilac”.  Dress-up challenge #1 – done.

20150305_083738Just a few days later came the first of our dress-up days at school, World Book Day.  Refusing to give in to M’s demands for a custom-made costume this year, I instead insisted he wore the army captain’s costume that we had bought for his representation as “Captain Emerald” at their birthday party and suggested he went as “Captain Nicholls” from Warhorse by Michael Morpugo.  We have recently enjoyed the stage production of Warhorse whilst it was on tour around the UK and M had bought himself the book for his admission to GOSH before Christmas, so he leapt at this chance, though in typical M style, he chose to be the lesser-known “Major Stewart” because he “got to ride Topthorn and not Joey, Mummy.”  G also wore a costume she had in her wardrobe and despite dicing with the idea of being “Dorothy” (Wizard of Oz) for the 3rd year in a row, ended up going as the “Princess” from Aladdin, wearing the Disney outfit from our Florida holiday last year.  Dress-up challenge #2 – tick.

20150306_154905The day after World Book Day, M had his Roman “Wow” day at school, requiring, naturally, a Roman costume.  He had originally toyed with the idea of going as a Celtic slave, but when the morning dawned, he had a change of heart and out came my trusty needle and thread, one of Mike’s white t-shirts, G’s plaited belt, M’s old white karate trousers and one of my red pashminas.  Less than 30 minutes later, our very own Roman-esque citizen made his way up to school – not bad for a quick Google search and 15 minutes of hurried sewing!  Dress-up challenge #3 – survived by the skin of our teeth!

 

20150311_210916I had a quick breather over the weekend, which was time enough to celebrate M’s 9th birthday itself and to gather the necessary base materials and trimmings for the next fancy dress requirement – a Greek toga each for the end-of-term Stagecoach performance.  Fortunately we were provided with a set of instructions on how to make a simple toga and G had acted as a model during Stagecoach a couple of weeks ago, so I had already had a sneak preview of how to put the costume together.  The togas themselves were simple enough to make, but then came the lengthy task of adding trim to suit the needs of my demanding duo and the trickier job of making the togas fit.  It might have taken a (very) late night, but the end result was fantastic and I can’t wait to see them perform on stage at the end of March wearing these masterpieces.  Dress-up challenge #4 – future success.

20150312_001820                        20150312_001831

And so it’s on to just one more dress-up challenge as tomorrow is Comic Relief and the challenge to “Make your face funny for money”.  The costume is the easiest part of the day as they just need to wear their own clothes to school, but the challenge will come early tomorrow morning, when we need to be up at the crack of dawn to give me time to face paint them both.  G wants a tiger and lion on her cheeks, so we’re going to cheat slightly by using M’s tiger feeding friend stickers on one cheek.  I’ve promised her a lion’s face on the other side as long as she’s happy with a cartoon style decoration.  If we have time, I’ll also do her hair in a funky style and, fingers crossed, both will last her throughout the school day and tomorrow evening’s Stagecoach session.

Courtesy of blog.partydelights.co.uk

Courtesy of blog.partydelights.co.uk

M’s face will take a little more work, but I wanted to do something a little different to his tube for the day.  The plan is to cover his tube with both the tegaderm dressing and then a layer of safe micropore before I get to work with the face-paints.  We’ve agreed on a snake design, which will hopefully see me camouflaging his tube as the snake’s tail as it winds around the back of his head, with the snake’s head, complete with sticking-out tongue, appears on the opposite side.  Whether it will work or not, we will just have to wait and see, but I promise a photo if all goes well!  Dress-up challenge #5 – still to be decided.

A busy weekend

This weekend has been pencilled into my diary and the family calendar for several months.  It’s looking to be a busy and important weekend for us and allows us to give a little something back to GOSH too.

allergy-free-show

On Saturday, we are heading bright and early to London to attend the Allergy and Free From Show at Olympia.  I had been told about this show last year, but unfortunately the dates clashed with other plans and so I have been keeping my fingers crossed, waiting to hear about confirmed dates for 2013.  As soon as I knew them, the weekend was booked and I applied for a set of free tickets for us all.

I will give you more of an update after the weekend, but I have to say the line-up looks fantastic.  We are all excited about the potential to find and try some M-friendly foods and M is hoping that we might discover a product we haven’t already tried.  I have been told that this show is a must-do for any family dealing with allergies of any description, so if you should find yourself near Olympia at the weekend with nothing else to do and some allergies to accommodate, I would highly recommend you pop along and find out more for yourself.

That counts as a treat for M, well you have to take your treats where you can find them in our family, so Saturday night we have a treat planned with G particularly in mind.  Those of you who know us, will know that both G and M attend a Stagecoach Theatre School and that the whole family loves nothing more than a trip to the theatre, be it for pantomime, musical, ballet or play.  G and M both learned some songs from the hit musical Matilda in the lead up to Christmas and G has been longing to see the musical ever since.  We had attempted to book tickets back in January when we were visiting GOSH, but it was sold out and so we had no choice but postpone this show for another time.  As soon as we knew the weekend for the Allergy show, I knew we had to try and get tickets for Matilda too and this time we were successful.  The children both know we are going and I can’t wait to see their faces as we experience the magic of this well-known Roald Dahl story.

soldout

Finally, on Sunday we are taking part in the RBC Race for the Kids to raise funds for redevelopment work currently going on at GOSH.  We were late entries for this one as we had planned to spend Sunday at the Allergy show again.  However, during our visit to GOSH in May, M spotted a poster advertising the RBC Race at one of the Underground stations and instantly asked if we could take part.  As we are already in London for the weekend and we know that we will benefit from this redevelopment work during future visits and we had both children on-board and happy to complete the 5K challenge, I instantly signed us up.

One of the challenges that could face us on the day, other than working out where to leave our luggage and how to manage 2 scooters plus bags on the train, is the severe joint aches that M can suffer as a result of the EGID.  These can be close to crippling at times and even though I’m happy to be “mean Mummy” and insist that he works through his pain to continue whatever he’s doing, sometimes he’s just in too much discomfort to be happy.  I’m hoping that the excitement about completing the race, scooting the 5K course and raising funds for “his” hospital will be enough to see him round.  Again, you will need to check back next week to see how well we all did on the day.

Finally, we are raising money for GOSH and so I unashamedly plug the cause and ask that if you feel that you can give anything, however small, to support this much deserving hospital, then we would appreciate it.  My heartfelt thanks go to those who have already so generously supported us.  Remember that every little bit makes a huge difference for the children and families who have reason to go to GOSH.