2017 started with a shock. My son, Harry, was born with Moebius syndrome – a rare neurological disorder characterised by weakness or paralysis of multiple cranial nerves.
It has no known cause and was totally unexpected.
No signs. No warning. Utter disbelief at the moment my wife and I were given the news.
We thought this kind of thing only happened on TV or in the movies. It felt surreal. And my world felt like it was crashing down.
Moebius syndrome means that Harry can’t smile or frown, can’t move his eyes side-to-side, has muscle weakness all over his body and has been fed through a nasogastric tube since birth.
At the time, I’d only just started Word Monster. With countless hospital appointments and the need to care for a disabled child, my dream of building a company was over.
Or so I thought.
But I wasn’t going to give up or give in. It’s just hard mode. And growing up with consoles like a Super Nintendo, Playstation and XBOX, I always chose hard mode.
When you believe in something with passion, put real effort in, and have the grit to get you through the tough times then you can achieve anything.
My family and friends have been unbelievably supportive. And I cannot thank my clients enough for being so flexible and accommodating.
After all of 2017’s challenges, I feel extremely proud to announce that Word Monster is now a team of two writers.
Thank you to everyone who’s helped. You’ve kept my dream alive.
It’s now 2018 and we’re all doing great. Harry recently had an operation to have a PEG tube fitted directly into his tummy. So now we can happily wave goodbye to the nasogastric tube.
Harry may not be able to smile, but he’s found his little laugh. Hearing that for the first time was the most beautiful experience. It’s so infectious, he often has us in hysterics.
As for Word Monster, we’re growing and keen to get involved with projects in rare disease therapy areas. Get in touch if you need any writing support this year.
Never give up. Never give in. No matter what stands in your way.
