My name is Joe, and I have a son who has Duchenne Muscular Dystrophy (DMD). I am wanting to raise awareness and funds for this life limiting condition. Please read the story below to better understand my family and myself and why a blind man like me is  taking on such a challenge.

Jack Robinson’s Story

Nuala and I have been very lucky to be blessed with three beautiful boys, Kian, Jack and Noah. Sadly, Noah passed away from SIDS when he was just 17 weeks old. Both Jack and Kian miss their brother, and we as a family speak about him often, and we always do something special as a family to celebrate Noah’s birthday.

Jack was a toddler that didn’t always meet the milestones expected. He was delayed in being able to sit independently, and was unable to walk until after his 2nd birthday. We have had many trips the doctors and hospitals, to try and find out what was holding Jack back. Nuala and I had discussed it many times over the years and both agreed that it didn’t matter how long it took for jack to be able to walk, because once he achieved it, that would be him, for the rest of his life. Unfortunately, we were wrong, In November 2019 we got a diagnosis for Jack of Duchenne Muscular Dystrophy (DMD), which is a progressive muscle wasting condition. This condition is also life limiting.

For the most part, Jack is a happy, fun loving, cheeky and mischievous young lad. Jack tires easily due to fatigue. He tries to keep up with his brother and peers, which can be difficult for him, and can make him lash out. Jack cannot run or Jump and walks a much slower pace than his peers. We as a family have adapted to Jacks needs and capabilities, but life in general cannot adapt to Jack, so we will do all wecan to help Jack through the stages of his life. 

          

Jack has a great support system in his family, but in the current climate of the global pandemic, he hasn’t seen his grandparents and cousins for over a year.

Jack will be in a wheelchair by the time he reaches high school. He is currently taking daily steroids, which can affect his behaviour and emotions. We try our best to do as much as a family as possible, so that Jack can experience as much of the outside world whist he is still without a wheelchair and mainly independent. Jack quiet often uses his bike, which we have adapted to a balance bike, so he can use it more freely, especially to school, so that he preserves some of his energy to help him with the day ahead. Jack can also struggle with simple movements such as standing from a sitting position, he has is own unique way of getting up and sometimes uses objects that are around him for help such as a chair.

We are so lucky to have Jack and Kian in our lives, they make everyday richer and fuller, we hope that you can all support Jack in anyway that he may need throughout his school life and he can take the friendships that he makes at this young age on into adulthood.

Thank you 

The Robinson’s