My Brave Boy
AClaire Wilson, 39, Weston-superMare s the clippers hummed into action, my friends and family cheered as they all crammed into my back garden.
‘No going back now!’ I thought, as our local hairdresser started to shave off my long brown hair.
Within minutes I’d gone from having shoulder length hair to having a buzz cut.
But how I looked was the last thing on my mind.
My hair would grow back, but the £4000 I’d raised was my way of raising awareness for cystic fibrosis - a condition I knew nothing about until my three-year-old boy Rufus was diagnosed.
My husband Scott, 41, and I already had two daughters, Lydia, 10, and Maeve, seven, when Rufus came along.
He seemed like a perfectly healthy little boy when he was born. A lifechanging condition sent this mum into action
But doctors had done a routine blood test, and two weeks later, we were called back to the hospital again.
‘I’m afraid your baby has cystic fibrosis,’ the doctor said.
It was a massive blow. Scott and I had heard of it before, but we didn’t know anything about it.
Doctors explained that Rufus’ lungs and digestive system were damaged, meaning that he would never be able to absorb food properly, and that he would have to be on medication and have physiotherapy every day for the rest of his life.
Scott and I were devastated. ‘So how do we make him better?’ I demanded, utterly shaken.
‘There’s no cure,’ the doctor said, gently explaining that Rufus would only live to about 40.
Our new born baby was suddenly so fragile in our arms.
But we knew we had to be strong.
Since then, we have settled into a daily regime.
Rufus takes a cocktail of medicines every day and every time he eats he needs enzymes to digest the fats in his foods.
I have to use a nebuliser on him to loosen the mucus in his lungs.
In every other way, Rufus is like any other three-year-old. He loves playing with his toy cars and seems to be unaware of his condition and the challenges that face him in the future.
His sisters adore him. They often ask questions about his condition, but they seem to be coping quite well.
Some days I can just float along as normal and follow the regime, but on other days it hits me hard.
No mum would sit by and watch their child do nothing when they needed help.
So, I raise money in whatever way I can to fund research to give my son, and others like him, a better quality of life in the future.
When I see Rufus smile, I know I’ll keep doing whatever it takes. I’m just getting started.
I’m just getting started
Whatever it takes Together we are stronger
Rufus means the world to me