We’ve got an extra special post for you today and we hope it will be warmly received by all of you - our wonderful Skiggle community.
I hope that you’ll all be familiar with my eldest son as the inspiration behind Skiggle. You may formerly have known him as ‘Will’ as this is how he was initially been presented via the charity (due to his age), but this is in fact his middle name. His birth name is actually ‘James’ and as James has recently turned 17, we now feel like it’s the perfect time for you all to meet him properly. As my husband said, “If he was able to, he’d no doubt be drinking with his mates and would probably be all over social media anyway like most 17 year olds!”
When we first came up with the concept of Skiggle in 2016, it was a step into the unknown. As well as being a busy mum to a child with complex special needs, I (Christine) also had two younger daughters, and my number one job – as it remains to this day – is to protect them all.
We therefore took the decision, with the exception of myself, not to make any of the family public on the website or on social media. Despite this, we’re sure you must all feel like you know James - formerly Will - and from now on, we’re not going to shy away from making James front and centre of Skiggle.
As of this year, we’re a registered charity in Scotland as well as in England & Wales, so it just feels like the right time. We are throwing all our efforts into growing the charity and further developing the unique services we are able to offer to the special needs and disabled communities. Oh and the most important thing.. James LOVES being the centre of attention – we can’t stress this enough!
To be completely honest, this is probably one of the hardest posts I’ve had to write and I’ve been very nervous about posting it. Not because people are seeing James for the first time, we all couldn’t be prouder of the personable young man he has grown into, but because we would hate for anyone to feel deceived or in any way misled that we didn’t introduce him as ‘James’ from the start.
Since the day he was born with such a catastrophic brain injury, we’ve fought in our own way to protect James. Through years’ of infections, long hospital stays in intensive care, and now to fighting one of the toughest battles to keep him safe in the wake of the Covid pandemic. Please forgive me if I’ve only ever been used to that one default setting of protecting my children.
We do hope you all understand and now we guess it’s time to finally introduce you to James… (pic above)
Name: James William Singleton
Favourite songs: “I want a hippopotamus for Christmas”
Favourite TV shows: “Strictly Come Dancing”
“Britain’s Got Talent”
“Room On The Broom”
Favourite films: “Harry Potter and the Chamber of Secrets”
Favourite activities: Peanut Tummy Time
Swimming and music
Favourite time of year: Summer time as it is James’ birthday
Morning person or night owl?: Night owl
Favourite sport: Anything that dad is watching
Favourite team/player: Anyone who dad supports
Favourite colour: Blue
Favourite book/ story: “The Scarecrow’s Wedding”
Favourite animal: Guinea Pig
Funniest tale: 'Ok, so here is a Saturday night summary on James' condition. Everything is as good as we could have hoped - we've gone from "life threateningly ill" to "when you might take him home" conversations in just 72 hours. Although he is still in intensive care, he has been off the ventilator since about 3pm and is coping very well and his blood gases are all excellent. He is increasingly alert and I'm hopeful we might even get a smile out of him tomorrow. The doctors are very pleased with him but think it could be several days before the infection is under control and even then we may face a difficult decision regarding replacing his line or not.
Now things look a bit brighter, there have been a couple of amusing moments today.
First, it became clear that there is a small concern about the almost neat alcohol being used to flush James' line as part of the plan to tackle the suspected infection in his port device. It seems he might be getting enough to intoxicate him - this is bloody annoying because, although Ronald Macdonald house is excellent, it is strictly alcohol free - so James is getting more alcohol than me which just can't be right.
Second, I took a break this afternoon to watch the second half of the Scotland v England rugby match - James gets a nurse all to himself on ICU so not much of a problem. I came back to find three nurses concluding a nappy change, all looking a bit flustered. Bearing in mind all that James was only wearing a pair of socks and a nappy under a sheet, I was a bit surprised to discover that in the course of changing him, they had thrown away both his socks and a pillow!!!! I hope you had all eaten before reading that bit of personal detail. I know James' carers will all be laughing.' (Dad [Fergus]: 2016)
Once we’ve started, there’s no stopping us! If anyone is in the Lancashire area, keep an eye out for James making his first public appearance in the local media in the coming weeks and thank you for your continued support.
Christine (and James!)