A WAVe of emotions

Over the past year it has been increasingly hard to share details of Jack’s journey with Duchenne

Like most 16-year-old boys, he has wanted privacy and control of what we shared of the physical and mental challenges he has faced.

Some of the things that have happened to him this year have been heartbreaking, like him taking his last steps. If you know, you know how truly shit it has been at times, but he has shown true strength and courage. We are always grateful to the people who have been there for us.

Last night on Netflix we watched ‘THE REMARKABLE LIFE of IBELIN’. It’s about the secret life of a young man who has Duchenne. He is a World of Warcraft gamer and his life is reimagined when his online friends contact his family after his death.

I urge people to watch the documentary as there are parts of his life that show the harsh realities of living with Duchenne. There are bits where Andy and I saw Jack in him and it broke us.

But I do rationalise the documentary by knowing that through projects we fund like DMD Care UK we are changing care for Duchenne and improving outcomes with new treatments and that’s down to you, our friends and supporters who have followed Jack’s journey, and supported us through thick and thin.

Today, we said goodbye to our car and hello to our wheelchair accessible vehicle (WAV). It has created a mixture of emotions: sadness that we have taken another step further down the road of Duchenne, but also relief that the vehicle will make it easier for Jack and for us to take him places (as most Duchenne parents will understand, my back is now suffering from the lifting of the power wheelchair and also Jack into the car).

I highly recommend SOGOmobility they found us and adapted a second-hand van. Give us a wave if you see us in our new WAV.