Our 7 year old son Robbie has a chronic condition called Eosinophilic Gastrointestinal Disorder, or EGID, which is a bowel disease. It's a mouthful and most people have never heard of it but it affects his life in every way. It's hard for Robbie because it's a hidden disease - people look at him and have no idea what he copes with and what's going on behind that smile. As an adult I know that I would struggle with these symptoms yet all these children have no choice and just keep going.
He struggles with; a weakened immune system because his bone marrow doesn't always do its job properly so he spends all winter fighting off one virus after another, an acutely inflamed colon which causes debilitating abdominal and rectal pain, unexplained limb pain, great difficulty going to the toilet every single day of his life and if he doesn't take ludicrous amounts of antihistimine his skin itches all over. As well as the daily discomfort and cocktail of medication that we could start our own pharmacy with, he also eats a very restricted diet because he's allergic to certain foods (egg, dairy, wheat and soya) which exacerbate his symptoms. He never complains about eating different food and his mum and big sister are always trying new recipes for "Robbie friendly" food so he doesn't feel left out, especially at birthday parties. He hates having colonoscopies but he knows that his doctors at Great Ormond Street are doing their best for him and he accepts it. He had surgery just before Christmas at GOSH but it's unfortunately caused problems exacerbated by a flare-up with the disease. He's pretty fed up with the pain and exhaustion at the moment but everyone is trying to help him cope with this bad patch, especially Dr Shah and Dr Thapar. A lot of medication just hasn't worked for Robbie but the current drug he's taking is finally helping and he's started to grow properly and gain weight. That was a great day when we got that news.
We are so very, very grateful to the gastroenterology team at Great Ormond Street. His consultants are inspirational; hugely empathetic doctors who passionately want to understand the disease better to improve these kids' lives. They really do care. Quite simply, without them we'd be lost and Robbie really would be in poor shape. They're one of the few hospitals in the world with this level of expertise but they've got a long way to go in their research. They told Robbie in January they can't cure him yet, they can only help ease his symptoms. That's why this trek is so important, to fund research and find solutions to this complex illness.
It now looks as though Robbie's one year old brother Angus has the same condition and we're desperate to help their doctors understand the genesis of this complex illness and find better treatments to help our family and many others.
My wife and I can't take his pain away but we can do something practical to help. So, for Robbie & Gus, I and my brother Paul are trekking to Mount Kilimanjaro helping raise awareness and much needed funds.We can't take those steps without you so thankyou from all of us - Brian, Annie, Isobel, especially Robbie and Gus.
Huge thanks for taking the time to visit my JustGiving page.
Donating through JustGiving is simple, fast and totally secure. Your details are safe with JustGiving – they’ll never sell them on or send unwanted emails. Once you donate, they’ll send your money directly to the charity and make sure Gift Aid is reclaimed on every eligible donation by a UK taxpayer. So it’s the most efficient way to donate - I raise more, whilst saving time and cutting costs for the charity.
I have guaranteed to raise at least £3,950 for the charity, of which approximately 50 per cent will be used the pay for the costs of my flight and accommodation. As a family we'll also be contributing. We have to raise a minimum of £4,000 but we're going to try our hardest to raise significantly more.
