Willow blog

“The complete and utter joy he felt will remain with both of us forever”

February 27, 2018

Katie, William’s mum tells us about the pain of his diagnosis and how they work every day to make every experience as fantastic as it can be:

“William was born in 1999, a very much wanted first child for me and my husband Ian. When he was born William appeared totally perfect and our life seemed complete. Sadly only 12 months in Ian and I separated and I commenced bringing William up on my own. 

At the age of 2 and a half William started attending his friends 3 year old birthday parties where games such as Musical Bumps and Musical Statutes were common. It became apparent to me that William would fall to the floor with no control and then have to crawl on his hands and knees to find me and use me to pull himself up again before rejoining the game. No one else’s child was doing this……and so began my 2 and a half year search to find out what was happening to my perfect baby boy. 

After many long, stressful, invasive and depressing trips to various specialists I was finally told William had Duchenne Muscular Dystrophy. I naively envisaged operations and tablets in our future to “cure” things. It was then that I was told that there was no cure, that his future held being totally wheelchair bound and dependent on others completely for everything. His life expectancy was anticipated to be late teens early twenties. I was told to “take him home and enjoy him” and so began some of the darkest days of my life.

I began to investigate Duchenne Muscular Dystrophy and found that my hunt for a diagnosis for William had taken a typical time period. I still find this odd when Duchenne Muscular Dystrophy is the number one genetic killer of children in the world. William reached a physical peak at about aged 4 and from there on he has slowly seen his physical abilities decline. This is due to the fact that his genetic code has a gap in it which prevents his muscles creating dystrophin which they need to work and repair themselves. He went into an electric wheelchair at age 9 as his leg muscles could no longer support him. He had to undergo a spinal fusion operation in 2014 to have two metal rods pinned down both sides of his spine and into his pelvis to enable him to remain upright and whilst he can lift his arms slightly he is now being robbed of their use. He can no longer lift a drink for himself, cut up his food, dress himself or undertake any jobs we do without thinking. 

This is, clearly, not how I anticipated life would be for him and since the diagnosis it has almost felt like a bereavement. I mourned for everything I assumed I have a right to when my perfect child was put in my arms, watching him play sports, school sport days, seeing him walk down the isle, and giving me grandchildren I could spoil rotten and then send home to their Mum and Dad. Duchenne Muscular Dystrophy became the first thought in every morning and the last thought of every night.

William, however, has never let his diagnosis hold him back and I now know it is my job to make each and every day as fantastic as it can be. William started at University last September studying for a Sports Coaching Degree as he is passionate about sport. He plays Boccia, which is a Paralympic sport akin to Boules. William is currently in the England Squad and hopes to push on into the Great Britain Team in time for the 2024 Olympics in Paris. 

William also has become a total devotee of football, passionately supporting Arsenal, initially because they played in red which was his favourite colour. As the years have gone by he has become more and more fascinated by the world of the Premier League, with many a happy Saturday spent yelling loudly at the television!

It was in light of this that he requested a trip to meet the Arsenal players……so off I went to try and find out how to make this happen. I contacted two charities who said I wouldn’t be able to make it happen. Then I happened across an article in the Duchenne Family Support Group magazine about “Willow” a charity organising special days for seriously ill young adults. I went straight onto the internet to investigate. Reading the criteria I knew this could be it…….I didn’t say anything to William just in case, as he had resigned himself to the fact it wasn’t going to happen. So I filled in the application and waited. Then it happened I got a call from Willow saying yes they could make Williams’ dream come true. I just cried because I knew just how much it would mean to him. When I went and told William he thought I was joking, but when it finally sunk in he had a little tear to (though he’ll tell me off for saying that!)

We had to wait a little while before we got a date through but Willow kept in touch and William remained positive and excited the whole time. Constantly looking forward to seeing where and how the footballers trained who he watched week in, week out, on the television and looked up to. Then we got the date. 

William got confirmation of the date just before Christmas and it was clearly the best present he could have had. He beamed and I was totally thrilled to see his happiness. Then it was time for us to travel up to the local hotel the night before going to the training ground. William struggled to sleep as he was SO excited. Whilst he hoped to meet one or two players he really didn’t have much idea what to expect. 

The next morning he woke up early in a very good mood! This was it. Off we went with high expectations, but it transpired as the day progressed our expectations were just no where near high enough for this wonderful charity. William was met at the door by the great Bob Wilson who was his guide for the day to all things Arsenal. The highlights just kept coming, watching the team train, meeting members of the team, meeting Arsene Wenger, getting his football shirt signed…..and finally getting some time with both Per Mertesacker and Jack Wilshere. William was completely overwhelmed and I was thrilled to see such a wide smile on his face. The complete and utter joy he felt on that special day will remain with both of us forever. It was complete magic. 

We would like to say a huge “thank you” to everyone involved in making these days possible.”

For more Special Days stories, please click here.