Jake is 12, he shouldn’t be here, he was only going to
live until he was 5. Every day is a miracle.
Now we need to perform a miracle and find Jake some
bottles he so badly needs. Help us to help Jake.
Meet our new buddy Jake. HUUUUUUGE darts fan – ONE HUNDRED AND EIGHTY! – Jake lives in Epsom, Surrey with his Mum, Dad and his older brother Daniels who’s 17, and his little brother George who’s 3. He has an amazing sense of humour and is very laid back, he loves people watching, and of course his darts, where he drinks loads while he watches the matches.
We are searching for a very special bottle last sold many years ago now, the only one Jake will drink from.
Jake is 12 years old now, which is a miracle, as he was only supposed to live until he was 5. Every day is a blessing for our little buddy and his family. Jake has an ultra rare condition called Fucosidosis, there are only about 20 people world wide with the condition. The condition is life limiting and Jake’s health has deteriorated over the last year.
Jake has to be fed by a tube which is no fun at all. He can drink some special thickened fluids but he will only drink them out of this very special bottle. It’s a sensory thing, don’t ask, all you need to know is the boy needs new bottles. Be aware there are loads similar, but they are not the same, and you can’t go tricking Jake with any old fake bottles!
We think they were made by our friends at Tommee Tippee (who I have messaged so please don’t suggest we try contacting them, we are on it). They were marketed as the ‘Quick Quencher’. TT do a similar bottle, but as I said above – no chance.
Colour doesn’t really matter, but he has used blue and yellow ones so they would be ideal if anyone had one.
Let’s get serious for a minute again. Jake is a gorgeous boy who doesn’t have a huge amount of time left, if he can’t and won’t drink then he will have to have everything through his tube. This isn’t exactly improving his quality of life, is it?
Jake has used this bottle since he was a baby and it is the only thing he has ever drunk from other than baby bottles when he was new born.
Karen – Jakes amazing Mum – said: “We are so desperate for these bottles, they will help Jake to be able to carry on drinking for as long as possible, otherwise we are going to have to give him fluid through his tube, which would be gutting as he loves his drink…”
Listen, guys. We can’t fix everything, we know that, it’s unlikely that you will have one of these at home, but I bet some people do, and the ONLY way we are going to find them is by sharing this FAR AND VERY, VERY WIDE. You need to HEART it, share it, comment even as that helps push it further. Then, tell your friends and family to share it, heart it etc, and their friends and family to share it….. Let’s get busy guys.