HOPE IN THE DARKNESS
As we launch our latest appeal, mother, Rebecca, describes the moment she discovered her son had Duchenne Muscular Dystrophy and the hope from Action’s research that keeps her going…
‘I initially became worried about my son Tom when at a local toddler group he couldn’t bounce on the trampoline like other children of his age. He didn’t start walking until 18 months and by the age of three he was still falling down quite a bit. It was then that I thought we needed to get him looked at by a paediatrician. So we did…
My world fell apart
I remember the day so clearly. It was a Wednesday morning and I was feeding my daughter, Amy, who was just seven days old at the time. The phone rang at 9am and it was the paediatrician. “I’m afraid I have some very bad news”, he said. “The blood results taken yesterday show that your son Tom has muscular dystrophy and on the basis of the results he has the severest form”. My mind started racing. “What treatments are there? And can we start straight away?” I eagerly asked. “Unfortunately there are no treatments”, he replied.
And then it hit me.
“Is my son going to die from this? Please tell me he’s not going to die?” I pleaded.
“It is a 100% fatal condition” he said softly. It’s at that point my world fell apart. Tears started rolling uncontrollably down my cheeks. I was in shock.
Further tests confirmed that Tom does have the severe form of the cruel, unrelenting disease that is called Duchenne Muscular Dystrophy. It seemed so improbable that my gorgeous, energetic son, who was still running around, albeit slower than his friends, would within a few short years lose all the skills he had acquired and become locked into a body, not able to move and then die. I thought the paediatrician would tell me that everything was fine and not for one minute did I think that it was something serious. I hadn’t even heard of Duchenne Muscular Dystrophy.
I learnt that Duchenne Muscular Dystrophy is a fatal disease that affects around 100 boys every year in the UK – usually when they are between three and five years old and that they experience progressive muscle weakness and wasting leading to a deterioration of their physical abilities.
Tom is now 7. We’ve bought a dilapidated bungalow which we’re currently restoring and adapting ready for Tom’s future needs, as by the time he’s around 10-14 years of age he will lose the ability to walk and require a wheelchair full time. He’ll then lose the use of his arms and require a ventilator to breathe.
Time is so precious and the research Action is funding gives us tremendous hope. It’s looking to develop a new medicine that could increase muscle strength and slow down the progression of the disease. For Tom, this could mean he is able to keep walking and using his upper-body skills to feed himself (or push buttons for example), for longer.
This potential treatment means everything to my husband and I and in our darkest hours it helps to keep us going. Too many parents have had to helplessly stand by as their children have deteriorated and died because of Duchenne. It is the thought of those mothers and fathers that make me appreciate every second with my son.’
You can find out more about Duchenne Muscular Dystrophy and our current appeal here