Hi, my name is Dylan and I have a condition called Achondroplasia, which is more commonly known as short-limb dwarfism.  I am 20 years old, I live in Liverpool and I am the second of 4 children (3 boys, 1 girl) in my family.

I am the first in my entire extended, average-height family to be born with a restricted growth condition, simply because of a spontaneous mutation.  I know that my mum and dad were shocked and a little overwhelmed when I was diagnosed with Achondroplasia 5 weeks after being born, and moreso because the Consultant Paediatrician simply wrote the diagnosis on a small slip of paper, slid it across the desk to my parents and advised them to go and look the condition up on the internet!

A few months after my diagnosis, my parents had their first consultation with a paediatric endocrinologist at the fantastic Alder Hey Children’s Hospital in Liverpool.  It was here that my parents learned of the many complications that children with my condition could suffer from. 

As well as likely delayed walking and motor skills, it is also common for children to have bowed legs, scoliosis, lordosis, arthritis, issues with joint flexibility, breathing problems, ear infections, and crowded teeth – and they were just the more immediate potential problems that would affect me in childhood, let alone what might happen when I was older!  And, if that wasn’t enough, there was also a good chance that I could have hydrocephalus.  Congenitally, I have a narrow spinal canal (and some spinal stenosis), which effectively means that cerebrospinal fluid is not able to flow in and out of the skull because of how the spine narrows.

Given that, untreated, hydrocephalus can be fatal, this became the number one priority for further investigation.  I was immediately referred to a Consultant Paediatric Neurosurgeon, Mr Connor Mallucci.  Reassuringly for my parents, he was really familiar with Achondroplasia and hydrocephalus, having worked and studied in Paris with a cohort of several patients with Achondroplasia and hydrocephalus.

After a month of head measurements and MRI scans, I had been confirmed with hydrocephalus and was booked in for surgery.  I was 7 months old.  From his time and experience in Paris, Mr Mallucci was trying to usher in a new procedure into Alder Hey, rather than going straight to a shunt.  This procedure was known as a ‘decompression’, which in effect was shaving a piece of my skull to try and open up the spinal canal to better allow cerebrospinal fluid flow.  My parents agreed to this plan.  Unfortunately, the decompression didn’t work so, 12 months later, I had a shunt fitted.

In the time since, I have had 2 blocked shunts and a shunt re-site.  Although I can’t remember those incidents, I understand that I was very unwell.  On one particular occasions, I had deteriorated so rapidly during the course of the evening that a team had to be gathered and the theatre opened at 3.30 am for the shunt revision to be done.

The only time I do remember my shunt causing me any real difficulty was when I was 13 years old.  I had been selected to represent Great Britain at the World Dwarf Games (WDG) in Michigan, USA.  4 weeks before our flights, I was rushed to hospital with appendicitis.  Thinking only of how this might affect my chances of going to the WDG, I could not really take in how the surgeons were so worried about how the site of the infection and inflammation of the appendix was so close to the tube that drains my cerebrospinal fluid out through my bladder.  It was an anxious wait before they decided to remove the appendix and then it was fingers crossed on my recovery!

And this sort of brings me to the main point of this blog…

I did recover from the appendicitis and although against medical advice, I went on to compete at the WDG in 2013.  I brought several medals home, across a range of sports but my most cherished was the gold medal we won as the junior football team.  I have since competed at the 2017 WDG in Guelph, Canada and again, won several individual and team medals.  Next stop is the WDG in Germany in 2021.

In 2015, I was fortunate enough to be selected for the England ParaBadminton squad and I have since represented England at various international tournaments. 

I have received personal accolades from Liverpool’s Lord Mayor and the Liverpool Echo ‘Pride of Merseyside’ Awards.  I have been really fortunate to travel to some amazing places in the world with my family.  These have been massive highs in my life but I am also grateful for the more mundane, ordinary and regular parts of my life. 

I went to mainstream school, didn’t do well in my GCSEs first-time round, went to a local college and did better.  I have volunteered for a fabulous charity – Everton in the Community.  I have a really close but wide and funny group of friends.  I love my family but I often bicker with them.  I sometimes go out and drink too much, I eat unhealthily sometimes (too often, my Dad says!).  I currently work part-time in Sainsbury’s and at weekends I coach football to kids ranging from 18 months to 5 years.  Like most people my age, I haven’t yet really made up my mind about what I want to do with the rest of my life.

The point is, yes, my condition does mean that I have to adapt to my environment and be a little more cautious about things but at no point have I been prevented from pursuing my dreams or also just living an ordinary life.  While hydrocephalus is a very serious condition, it does not define who I am and what I do. 

I genuinely get a buzz getting up each day and I am a real ‘can do’ person.  I hope this blog offers some reassurance and positive thinking to others out there…