The story of Jude

This is my story , my mom wrote this with me .

Hi , my name is Jude I am 18 years old and I currently attend college , I am on a life skills course.

I was born at 37 weeks by caesarean section and soon after I was born mom thought I had unusual facial features and did think something might be wrong . I had a delayed closure of the anterior fontanelle with a triangular shaped face . I didn’t have the ability to suck and couldn’t feed so I was fed with a syringe , this was very challenging but I managed to suck about 7 weeks old . I also had undescended testicles and clicky hips . As time progressed my overall development was delayed I wasn’t meeting any milestones . I was then diagnosed with a global developmental delay . I had many challenging and difficult years , I struggled with anxiety , regular outbursts , at age 9 I was diagnosed with autism spectrum disorder, a low frequency hearing loss , behavioural difficulties and dental problems. During my primary school years I had a statement of education special needs and attended a main stream school with full time one to one support. During this time it was suggested we enrolled on a DDD study this is a national genetics study and bloods were taken from me , Mom and Dad . Mom says I bring the sunshine into people’s lives although I am very vulnerable and need support ,supervision at all times .

Finally At the age of 10 I was diagnosed with KBG syndrome which is very rare . I was told that I was one of the first to be diagnosed in the UK . KBG first came about in 1975 it originated in Turkey . Mom and dad were
really relieved to finally have a diagnosis for me after so many years ,but it was a big shock to us all . We have seen so many specialists over the years but unfortunately not many have heard of KBG syndrome or can they support us in any way .

I do struggle with fatigue and find it hard to stay awake because of this I can’t do anything too strenuous. I like structure and routine . I love to live life to the full.

Mom decided it was better for me to go to a special school for my secondary education. It was the best decision for me because this is where I flourished, within weeks I felt content and happy ,all my insecurities were met and I thoroughly enjoyed many , many , happy years in school. I had lots of help and the activities suited me well. I enjoy singing , dancing , socialising with family and friends. In my spare time I like to fundraise and raise awareness of my syndrome . I help at lots of charity event’s . Over the years I have made some wonderful friend’s I’m a very happy fun loving person and in the future I’d love to work in fundraising or something similar. I’d also like to continue working on my independence and perhaps live in a supportive living environment ?