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?
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