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Ryan G's Story

Ryan G's Story

Well ermm where do I begin? Do I start on how I felt when I found out the news that my four-year-old sister has a very rare condition called Vascular Ehlers-Danlos Syndrome, or how life is at the moment? 

I think starting how I felt when the devastating news came will be a good start. So yeah, how did I feel on 19th December? I remember waking up at my normal time at six in the morning getting myself for school and I knew something was up, when both of my parents were also getting up. They normally stay in bed till half seven, but that day was different.

I asked my mother why she was up so early, and her response was that they had the important meeting about Annabelle on where I didn’t need to worry. Time came for me to leave for school, on which I did as it was Examination Mock week.

I remember getting a text message from my mother on the way to school saying, ‘Good luck on today’s mock exam, don’t worry about Bella, everything will be fine.’ But we all get that feeling that it won’t fine even if it was and I got that feeling.

Luckily, I was able to move Annabelle’s important news to the side and I was able to complete the exam with no worries, but after that I wasn’t my normal self and my teachers/friends could see that. 

After I finished school, I texted my mum to try and get more information, but she didn’t text back. So I got home and like every school student, I threw my uniform in the wash and got changed, and got myself a packet of crisps and sat down to watch TV.

"I was heartbroken, annoyed, and angry and many other things, I personally thought God was punishing me for something

Time went by and I got hungry and got to the point to text the parents asking them to pick a pizza up but once again no reply and that was strange to say it was about 5:45 in the afternoon. It got about 6:15 and the door alarm went and Annabelle came running in with the quietest parents ever. 

My dad turned the TV off and gave both me and my brother information sheets about Vascular EDS, he then told us the news on which during that time I looked at my mum and she started to cry.

She cries at the littlest things on TV too seeing me in my high school uniform in year seven but seeing her cry at that time, I knew something was up and I felt like I lost everything. I was heartbroken, annoyed, and angry and many other things, I personally thought God was punishing me for something. I mean I hardly cried that year but just under the first twenty minutes of getting the news I was swimming in my own tears I was that upset.

It took a while to sync in but we finally got around knowing that we cannot do half the things we would like due to Annabelle’s condition. It’s an awful feeling knowing that she can pass away any second as something in her body could rupture and that we can’t do things like go on an plane due to her blood pressure or going on roller coaster and many other things. 

To be honest we could sense there was something wrong as she got little bruises from the slightest of things but none of us thought it was going to be as bad.

My father changed and become more protective over her and so did my mother, but it affected my mother more as she had to stop working, as she needed to be on standby 24/7. 

Mine and my brother’s life changed, on where we can’t play football with her or go to the park on our own as well as not being able to go on a trampoline with her.

When you see my little sister, Annabelle you would think hang on a minute there is nothing wrong with her, she is normal, but once you see the bruises she gets and you actually look at her eyes, lips, ears and chin, you will find that she isn’t. People who have Vascular EDS have small ear lobes, prominent eyes, thin lips, small chin and even a narrow nose.

Annabelle is quite a character getting me and my brother told off as well, she winds us up. My father and her have their own saying, which always works unless she wants something from my father and that is, ‘What Bella wants, Bella gets’ She is such a lovely girl though and it’s really upsetting that she has been diagnosed with Vascular EDS.

To be honest I think she is lucky on being diagnosed so early in her life, as it has let us start raising awareness and we hope that there will be treatment soon but it’s unlucky as she can’t do things like normal girls. 

She won’t be able to have her ears pierced, she can’t have tattoos, she won’t be able to have children, she can’t go abroad unless we drive down and she can’t be as active as other children, as she has to have a rest or her legs start to hurt.

Overall, when the news hit that Annabelle has vascular EDS, I was angry, upset, scared and shocked and I felt like I couldn’t do anything to help, but because of my family and friends, I have done what I can and will do more for EDS Support UK and Annabelle.

I personally didn’t think I would do the Manchester 10k Run or help around during our Charity Ball or even get through the raise awareness month in May but with the help of family and friends, I did and I want to say thank you for all your support and help you have done. You honestly don’t know how much it means to me as well as the Griffin household. Thank you.
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