BEN VS DUCHENNE
Raising awareness of Duchenne Muscular Dystrophy (DMD)
My life living with Duchenne Muscular Dystrophy. Raising awareness of my rare condition and funds to ensure the best quality of life for me and others with Duchenne.
In August 2017, Ben was referred to a Paediatrician due to his propensity for falling over and hitting his head. Little did we know that this would be a life changing appointment.
On the evening of 31st August 2017, a call from the Paediatrician confirmed our worst fears. Ben has Duchenne Muscular Dystrophy.
WHAT IS DUCHENNE MUSCULAR DYSTROPHY?
Duchenne Muscular Dystrophy is one of the most common fatal genetic disorders to affect children around the world. 1 in 3500 boys are affected with DMD.
It is a devastating, progressive and currently incurable muscle-wasting disease.
Duchenne results in progressive loss of strength and is caused by a mutation in the gene that encodes for dystrophin, a protein that plays a key structural role in muscle fibre function. Boys with DMD do not produce dystrophin.
Needless to say, it has been a time of reflection, research, many visits to doctors, neurologists, physios, occupational therapists, orthotists and most importantly long cuddles and time together.
Ben continues to blow our minds with his resilience and positive outlook, although he does know that something is not quite right.
We continue to keep life as normal as possible and that's all we ask from our friends.
The Heartbreak and commitment
Every Duchenne Parent will remember the moment their lives changed forever.
This illustrates the pure emotion we felt at the time and still do, occasionally. But also our resolve and commitment to provide Ben with the best life possible.
BEN'S BIG BUILD
The next BIG project
The next stage in this journey is to adapt the family home to make it fully accessible for Ben in the future. This involves gutting all of downstairs, adapting the current play room into an accessible bedroom and wet-room. Ensuring there is sufficient space for Ben to be part of all aspects of family life.
It's a massive project and when completed will make our family home somewhere we can all be together.
We will keep you updated when the work starts.
If you would like to support the project, you can donate HERE.