Tag Archives: fund raising

Ringing in the New Year!

Leave a reply

As we count down to the New Year, I have to confess to being glad to saying goodbye to 2013.  The last 2 years have been tough for our family and I’m looking forward to a more positive 2014.  We’re still not at our ideal place with M, but we now have a diagnosis and every day sees us taking a step – be it forwards, backwards or just to tread water to stay where we are – and we’re hoping to make some real progress in the 12 months ahead.  All that being said, there have been many highlights of 2013, not least of which has been the adventure of starting this blog and below are a few of my favourite:

Courtesy of carevan.org
Garfield and I have a lot in common!
Courtesy of kotaku.com
The George Cross awarded for “acts of the greatest heroism or of the most conspicuous courage “
Poor Cat, all ready for surgery, but relegated to wait instead
Courtesy of tesco.com

Wishing you all a happy and peaceful 2014. May your new year wishes be fulfilled.

Our charity needs YOU!

Leave a reply

Fabed needs youFABED (Families Affected by Eosinophilic Disorders) is a charity close to our hearts.  As I’ve mentioned on many occasions, FABED is a small charity supporting families like ours who are living with the challenges of a child, or children, diagnosed with eosinophilic disorders.

In the last 12 months since we’ve had M’s diagnosis, we’ve struggled to get to grips with the implications of EGID for M: how we can manage his health, coping with the impact of it on, not only M, but our family as a whole and how we communicate and explain this chronic illness to those surrounding us.  In particular, we’ve found it hard to fully explain the effects of EGID on M to his teachers and school as they rarely see the negative side – the sleepless nights, the chronic pain, the diarrhoea and the frustrations – because M just gets on with life at school and keeps his melt-downs for home.  Without the support of FABED and its wonderful families, I’m not sure how well we would have coped.

FABED

FABED is keen to produce an educational leaflet specifically for schools, separately aimed at both the Primary and Secondary education sectors. This will raise awareness of a rare, but increasingly prevalent condition, which can take years of struggle to diagnose. Helping schools to understand this disease will help alleviate just one of the many areas that families have to deal with.

This is where YOU can help.  Galaxy Hot Chocolate are looking to help small, local community based projects and community minded people through their GALAXY Hot Chocolate Fund. Eighty £300 awards will be given to help small groups and we would love for FABED to receive this money and achieve their goal.

A vote from you will make a big difference to children like M and families like ours, so please take a moment and add your vote.  Just click on the link below to cast your vote and remember to confirm from the e-mail sent to you:

http://www.galaxyhotchocolate.com/fund/fabed

thank-you-languages

Huge thanks

2 Replies

thanks

This is just a quick post to say an absolutely huge thanks to those of you who very kindly sponsored us a couple of weeks ago when we completed the RBC Race for Kids.  This 5k walk was looking to raise funds for some much needed improvements to Great Ormond Street Hospital and M was keen to participate to support “his” hospital.

Donation

Thanks to your generosity, we raised a massive £481.25 for GOSH – we all thank you very much.

Exhausted!

9 Replies

It’s been a long, exhausting, but fantastic weekend.  We’ve got so much more from this weekend than we had expected or even hoped we might.

Saturday was a busy day at the Allergy and Free from Show and I really wish we’d had the 2 day visit we’d originally planned.  Just to give you an idea, the photo below is a small part of the hoard of M-friendly goodies we came back with:

SAM_1171

We managed to pick up some of our family favourites at “show” prices, which meant that lots of the products were at half price or less, but also found some new things too, which were either new to the market by some familiar names or simply new products to us.  Amongst the new treats we discovered were

  • Bfree Gluten and wheat free tortilla wraps – perfect for M and G’s lunchboxes
  • Gluten, wheat and egg free spaghetti – the manufacturer assures me it won’t go sticky during cooking like so many other brands do.  This is one that we’ll have to try and see
  • MozzaRisella – a mozzarella-type cheese made from rice and containing no dairy or soya
  • KoKo Strawberry flavoured coconut milk –  not just a new flavour, but now also available as a pack of 3 250ml cartons, perfect for a treat on a day trip

We found that all the stall holders were knowledgeable, informed and friendly.  Nothing was too much trouble for them and they all took their time to talk with not only Mike and me, but M and G also.  We were also lucky enough to meet the wonderful folks of both Fabed and Parentsown and discovered them to be even more delightful and helpful than they are on their respective web forums.  Finally, the children were collared by well-known TV weather girl, Sian Lloyd who had her very own weather map on hand to show the pollen count and problems experienced by hayfever sufferers in the UK.  She spent a long time teaching both G and M how to present the weather, had photos taken with them and chatted to us about M’s condition and why we were visiting the show.

My round-up of the show has to be M’s quote on whether he enjoyed our visit:

“It’s the best show we’ve ever been to, Mummy.  Can we come again?”

Sunday was another great day, although the sunshine we had been hoping for didn’t materialise and the morning was overcast and grey.  We made our way across London and eventually reached Battersea Park to join around 3,996 other people in the 5K RBC Race for the Kids raising money for Great Ormond Street Hospital.  It may have been a less than sun-filled day, but the number of people taking part was amazing to see and I can’t wait to hear the final figure for the amount of money raised.  We didn’t rush to get to the start early after a late night at Matilda on Saturday – and before I forget, I highly recommend a visit to the Cambridge Theatre to see this awesome show – but we felt the camaraderie and excitement of the walk nevertheless.  As requested by M and G, we had taken along the scooters and they happily led our way as Mike and I followed, alternating between a walk and a gentle jog.

We had some highs and lows along the way with M as expected as he took the occasional tumble from his scooter (we’re still working on the balance issue as he struggles because of the dyspraxia) and minor tantrums as it appeared that G might beat him across the finish line.  However, finish it we did and we collected our medals and goodie bags, completed a quick tour of the entertainment provided for those who took part and even fitted in a play at the fantastic park in Battersea, before heading back across London for lunch and our train back home.

I’m still waiting for a final couple of donations to be made before I can update you on our personal family fundraising total, but, for the interim, here’s a photo of M in his race t-shirt, RBC lion and medal.

SAM_1166

National Eosinophil Awareness Week

1 Reply

Week

Forgive me for interrupting our “story so far” and I promise that normal service will resume soon, but I wanted and needed to raise awareness of the importance of next week.  As the image above shows, May 19th – May 25th is a week dedicated to raising the awareness of everyone to Eosinophilic Disorders.  Until we were dragged kicking and screaming on this tumultuous journey with M, neither Mike, I or indeed our families had ever even heard of Eosinophils, let alone had any idea what they did and the massive impact they could have on life as we knew it.

We are amongst the lucky ones as M is able to eat “proper” food, even with all his dietary restrictions and is happy to take his medicines on a daily basis to help manage the symptoms.  There are very many children out there who have even more restrictive diets or cannot eat at all and instead are fed through nasogastric tubes.  That could so easily have been the position for us and could still be if we can’t stabilise M to everyone’s satisfaction, and so I’m thankful for every day that it isn’t.

Over next week and the weekend of June 8/9th, we will be committing to raising awareness and educating friends and family about M’s condition.

Next Friday, May 24th, is “Eat like us” day, when families of children with EGID will be committing to eating like their child for the day.  Mike and I are, however, committing to something slightly more.  We will be adopting M’s diet for the full week, adapting our recipes and meals to accommodate the “egg, dairy, wheat, gluten and soya” free diet he has to eat everyday.  On the Friday itself, we will be eating exactly what he eats for the day, though I’m not sure either of us will be braving the Protein shake!

On Sunday June 9th, we have signed up to walk the RBC Race for Children in Battersea Park, London.  This 5k walk/run/ride/scoot is to raise money for GOSH, who are currently redeveloping the hospital to create more much-needed space for the children, family and staff who are there on a daily basis.  M is keen to fundraise for “his” hospital and as we are already in London that weekend and have a lot to say thank you to GOSH for, it was a really easy decision to make.

This is not M’s first foray into fundraising for GOSH.  Following his and our stay at the Patient hotel last January whilst he had his scopes, M asked how much money it cost to support a family to stay there with their child for the week.  Through some research on the GOSH charity website, we learned that £50 would pay for the upkeep of one room for a family for 5 nights.  With the help of the Stagecoach theatre school that G and M have been attending for 5 and 3 years respectively, the end of term collection in March 2012 raised a fantastic £135, which will pay for nearly 2 full weeks for a family in one of their rooms.

I will be updating my blog on a daily basis from May 19th to detail our menu choices and how we manage the week on the diet M has been following for the last 2 years.  It will undoubtedly be a tough week for us and I have to ask – would you be brave enough to walk even 1 day in the shoes of these courageous children?