My Brave Boy

Pick Me Up! Special - - Health & Happiness - Visit www.just­giv­ing.com/ fundrais­ing/claire-wil­son-78 to make a do­na­tion.

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

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