Hello my name is Katie Jayne and I’m here to tell you about my life, living with a rare disability called 22q.11 deletion which is also known as Di George Syndrome or Velo Cardio Facial Syndrome or VCFS for short.

I was born in January 1992, that makes me 29 years old now, only one year until my 30th birthday! I live in the seaside town of Scarborough, North Yorkshire with my mum Tracey and my sister  Charlotte. Charlotte also has 22q but she has different problems to me. Our parents are divorced, which happened when I was 16 years old and we still get to see our dad.  

We found out about 22q in 1997 when I was about 5 or 6 years old. The doctors at Great Ormond Street Hospital knew straight what was wrong with us. If it weren’t for that hospital,  I wonder where we would be today?

I had my first operation at Great Ormond Street Children’s Hospital in 1998, when I was about 6 or 7 years old. It was on the same day as my sister Charlotte’s operation. Our mum didn’t know what to do with herself when we had our operations on the same day. Mum says, there was one that slept for a week and another that didn’t take their medications.  I was the one that slept for a week (oops) but I did wake up though.

 1999 was an amazing year for me and I can still remember it well.  I was awarded a ‘Child of Achievements Award’ which is now called ‘The Pride of Britain Awards’. I also went to the Blue Peter studios in London and I also went to Lapland at Christmas time which was very magical.  My sister met her favourite pop band Steps and she met them when she was younger too.

When I was younger I’ve spent my time in and out of Scarborough hospital due to bad chest infections which led me to having pneumonia, but now I just get the common colds and the odd chest infection but that’s just in the winter time.

Throughout my school life I had 1-1 support for 15 hours, to help me in my lessons because I went to mainstream schools which were Gladstone Road Infants and Junior School and Graham School as my secondary school. I also had support there. In between my school life and my hospitals appointments I had speech therapy which I hated at the time.  

 Having 22q has never stop me doing activities. When I was growing up I went to Rainbows, Brownies and Guides which was fun, and I also did some dancing, ballet, along with bit of tap dancing. My mum said that I went on stage when I was ill and went into hospital the next day.

Then a few years later, I went back to some dancing which I enjoyed doing even with a bad back because I found out that I had a curved spine as well. I only did dancing  up to 2008, which was the year I left school. It was on a Tuesday but then it swapped to Friday evenings  but I also had Guides on that day and I didn’t want to make myself tired by doing too much at once.

In between my school life I had loads of hospitals appointments to attend, which meant I had to miss bits of school because we had to travel to Great Ormond Street Hospital in London for speech check-ups and 22q related things too. I also had to travel to Leeds General Infirmary for my back/spine check up and other different things.

In 2003, I found out that I suffered with scoliosis which means having a curved spine. It  made me have bad back pain for most of the time along with sharp chest pains which were annoying at times! I also found out that I suffer with a brain condition called Chiari malformation type 1 (where the lowest part of the back of the brain, the cerebellar tonsils drops down into the top of the spinal canal) but I can’t remember what year I found out about this, probably between 2007 and 2008 when I had a MRI scan for my spine.

My spine operation still went on as normal, after I saw the brain doctor which went fine. My spine operation went ahead on the 6 December 2011 when I was 19 years old, that was about 9 years ago, …gosh, that’s gone fast!

I’ve got a mixture of friends throughout my life. I wasn’t popular at school but I have one main friend who has stuck with me since we were young and we are still friends today, even in hard times, from Gladstone Road School, up to Graham School and Yorkshire Coast College, even though we did different things. Her name is Kayleigh. We been through a lot together and she been there for me and me for her, even now that she is a mum to young boys, who I adore.

We had crazy times when we were  teenagers, like sleepovers. I remember we both decided to get up at 4am just to get a bus to Leeds for a day out! It was mad, but we had a good time.

I have met some lovely friends through my 22q deletion family at Max Appeal. I go on Max Appeal trips and meet ups. We are all able to explain our stories to each other. We are in the same boat and we can support each other and it’s nice to have that connection and others who understand.

I have some friends from Yorkshire Coast College who I keep in touch now and again,  through Facebook and Twitter (if they use social media). I went to college  for 3 years after I left school, from 2008 until 2011 I and studied a foundation course at college, which included  everyday life skills which I did for 2 years. Then I studied routes to employment, where I met more friends.

I finally had corrective surgery on my spine on 6 December 2011 at Leeds General Infirmary. It meant me and mum having to catch the first train from Scarborough just to get to the hospital for 8am. The operation took 7 hours but I did wake up ok. I was then in recovery for 2 years after my spine operation.

I joined a choir which is called Twilight Productions and I did my first show with them at Scarborough YMCA Theatre on the 6 June 2012, it was called ‘That Entertainment’. The choir is on Friday evening and I love it.  I may be 29 years old but I don’t look it. I was part of their Glee Club for while which is held on Monday evenings. When I first started going along I was 23 years old and I’m still involved with their drama group, on the Tuesday evenings. It helps  me with my speech and building my confidence, due to being involved.

In 2016, Twilight Productions nominated me for an award called ‘Scarborough Thank  You Award’, I was nominated for the ‘Courage Over Adversity Award’ and I won! Twilight have helped me to build my strength after having my spine operation and they have seen confidence grow from stage performances and local performances when the choir go out and perform in public.  I love to perform  on stage because it’s fun to do. I even did shows when I was at school such as Oliver, The Lion King and Grease. Every time I go to Twilight Productions it’s my free time away from appointments and I can just be myself and they treat me as normal as possible even though I have 22q.

Over the years  I have met some celebrities like Keith Chegwin, who gave me my Child of Achievement award in 1999 and Konnie Huq a former Blue Peter presenter. I met loads of people at the Child Achievement Awards, but I can’t remember them all, as I was only 7 years old. I have met some other celebrities like Hayley Tamaddon from Coronation Street and Dancing on Ice. Colin Baker and Kai Owen from Doctor Who and Torchwood. I also met Olympic winners  Jayne Torvill and  Christopher Dean ( Dancing on Ice tour) when I went to watch it at Sheffield Arena. I hope one day, I can meet some of my idols like Eve Myles, Jodie Whittaker and Claire Foy, just to name a few.

 In 2012 we had last our last visit to GOSH,  just to see how we were getting on as we were getting older. They are pleased with our progress and things were going right and we got  discharged! I do miss GOSH, because it was part of my childhood and sometimes I think about the hospital. 

The last couple of years has been brilliant, I’m still performing with Twilight Productions.

In 2013-2014 I still have to, travel to Leeds for my appointments for my back check-up but I got discharged from that too. I also had to go to Leeds for my Botox injection that was every couple of months until I had a operation in 2015 just to help me smile better.

In 2013, I started to go to Mencap once day a week just to get me out of the house. I went on Wednesday’s. it was ok, but I don’t go anymore.  Just a few years, later in 2015 I started going to Creative Day Care. I started off doing 2 days a week, on Mondays and Wednesdays then, I started doing half days on Friday or a full day one week, so now I do Fridays. I’m hoping to do a Thursday but just for once a month.  Creative Day Care is in Scarborough and it’s run by  lovely lady called Ruth.  I’m still there 5 years later and I was a first member at the Scarborough base. There is another one at Hull. Every day since I’ve started at Creative Day Care I have learnt new skills like card making, getting better at my art and my dancing,  meeting new people and also doing bit of British sign language, which we use for songs. I’m hoping to do some horse riding at some point, and we also do bit of drama too. 

The last time I updated this in 2015 I was about to have another operation which was for my teeth, that’s been done and also my lip just to help me smile, that’s been done now too.

Then, in 2019 I started another group called Street Signs with a staff member from Creative Day Care who is a lovely lady called Jo.  She was one of the first staff members at the Scarborough branch who I met a couple of months after I started attending. We bonded really well. If I can’t talk to mum about stuff or other things I can talk to her about it all and we just have a laugh too.

The signing choir meets on Monday evenings and we sing songs from musicals, pop, Disney, different genre  and of course Christmas songs when the time comes. In 2019 we managed to raise about £5,511 for the Staged at the Street.

So, this is where we are at now, I’m still busy doing what I love to do, in-between hospital appointments and stuff, still enjoying much of life and meeting new people and making new memories and friendships and having adventures. 

Oh, since the last time I updated my story, we got a dog called Cody and he’s now 5 years old. He’s a Yorkshire Terrier cross Chihuahua.

So, this is where we are now and  thanks for reading this. Do you know the song from the Greatest Showman which goes like this?

 “When the Sharpest word wanna cut me down, I’m gonna send a flood gonna drown’em out I’m brave I am bruised I am who I’m meant to be look out cause here I come and I’m not scared to be seen I make no apologies”

Katie Jayne

January 2021