This time eight years ago, I watched England get knocked out of the world cup by Portugal on penalties. As I sat shouting at the TV I had no idea that two days later I would be told that my slightly clumsy, happy boy was actually not clumsy but suffering from a muscle wasting disease that had been quietly taking his strength from the day he was born. I can still remember what we were both wearing on that beautiful summer day as we walked into the hospital, clueless of how our lives were about to be turned upside down. The doctor asked for myself and my mum to go into her room, but for Declan to stay in the play room. As I sat there, terms like ‘muscle wasting’, ‘wheelchair’, ‘breathing’, ‘surgery’ and ‘I’m sorry’ came tumbling out of the consultants mouth. Eventually I asked if this would mean I would lose my son in his sixties, and was told “Sorry Alexandra the life expectancy is 18”. As my head hit her desk and my body felt like it was drowning in the endless tears, I stood up, wiped my face and asked her to tell the rest to my mum,?I needed to be near my precious boy. For that split second I felt like my life was over until I saw Declan trying to get up onto a rocking horse. I lifted him up and turned around so he wouldn’t see my eyes filled with tears and heartbreak, and saw a poem on the wall called ‘Heaven Sent’
A meeting was held quite far from earth,
It’s time again for another birth.
Said the Angels to the Lord above,
This special child will need much love.
His progress may seem very slow.
Accomplishments he may not show.
And he’ll require extra care,
From the folks he meets down there.
He may not run or laugh or play,
His thoughts may seem quite far away.
In many ways he won’t adapt,
And he’ll be known as handicapped.
So let’s be careful where he’s sent.
We want his life to be content.
Please Lord find the right parents who,
Will do a special job for You.
They will not realize right away,
The leading role they’re about to play.
But with this child sent from above,
Comes stronger faith and richer love.
And soon they’ll know the privilege given
In caring for this gift from Heaven.
Their precious child so meek and mild,
Is Heaven’s Very Special Child.
At this point I felt that all my training in childcare and holistic therapy hadn’t been in vain, I just hadn’t realised that the skills I had learnt wouldn’t be used to pay the bills and help other children, but we’re to help my own son. I was able to use these skills to make physio fun and fight Declan’s corner when others were ready to give up on him. That poem now sits in a frame in my dining room. These last eight years have seen many tears, house moves, nasty gossip but mainly smiles and unforgettable memories. The past eight years have been hard, especially knowing that a fault in my ovaries caused this condition in Declan, but in those years the knowledge and research of the condition has brought new hope.
Unfortunately none of the potential treatments that are currently close to being used would be right for the type of mutation that has caused Declan’s body to not produce Dystrophen, but it will help many other families to not go through what we are. Boys are now living into their twenties, going to college and university, Duchennes doesn’t have to be the end of your dreams, it might just take a little more time and determination to get there.
As I’m writing this and reflecting on the past I’m filled with pride, I have an amazing son who continues to shock doctors with his incredible inner strength, to me I’m the luckiest mum in the world.