News & Events

Sibling story - Will

Last Reviewed 08/11/2017

By swan uk members, will jones

My name is Will, I’m fourteen and live in Barnsley South Yorkshire with my mum, dad, little brother James and our silly Labrador Holly.

James is eight and has an undiagnosed genetic condition that affects his lungs, immune system, bowel and his liver. He is autistic with a lot of sensory issues and severe Pica which means he likes to eat lots of non-food bits like paper, plastic and wood but doesn’t eat lots of proper food so he has a feeding tube in his tummy which helps us to give him his many medications and a specialist feed. James’ nurse and Mum trained me to use James’ ‘button’ when he first came home from the hospital with it as I wanted to help when I could.

When James was first born I was so excited to have a little brother but he was really poorly and kept having to go back into hospital which meant my mum disappeared a lot too. My dad works away from home so I had to go live with friends or my auntie Claire which was really hard because I was used to mum being at home all the time but all our family and friends tried really hard to make the time fun and take me to visit James and mum in hospital most evenings.

I really get upset when James gets poorly  and Mum tries everything in her ‘keep James out of hospital cupboard’ to keep James at home with us. The worst time was when we went to see Disney on Ice and when we got home James was really poorly and mum knew that we really needed lots of help so she had to call an ambulance. The paramedic was really good and explained what was happening but I was frightened and so was mum. James then spent eight weeks in hospital fighting sepsis – he was even in hospital for his fourth birthday but mum made sure we still celebrated and we had a party in his hospital room.

James is really funny; he loves clapping his hands and flapping his arms when we are out and about – mum and I just laugh when everyone stares at him. He loves his iPad and watching children play with trains, he loves Thomas the Tank Engine. James also loves dinosaurs and knows every single name of all his dinosaurs which is really cool.

James sometimes needs to use a wheelchair when he is feeling poorly or if we go somewhere new or loud and I love pushing him fast around the corners – he laughs and screams ‘again, again’.

Having an undiagnosed brother can be really difficult at times especially when we have to cancel plans because James isn’t well enough or James has to stay at home and misses out. I know this makes my parents sad as family time is very precious.

The best part of having James as my brother is that he always smiles and shouts my name whenever I walk in from school. When James was little we were told he would never speak so the first time he said my name when he was five was very special. I love that James keeps proving the experts wrong. The best part of joining SWAN UK is that I’ve made friends with other swan siblings and we get to meet up and have fun at events. We have had some great days out.

If I could change one thing about James it would be that he didn’t get so poorly and have to miss out as much as he does.

 

WE WANT TO HEAR FROM YOU. IF YOU'D LIKE TO SHARE YOUR STORY PLEASE EMAIL US: 

INFO@UNDIAGNOSED.ORG.UK

TO FIND OUT ABOUT JOINING SWAN UK VISIT: UNDIAGNOSED.ORG.UK/JOIN

 

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