HEART
From the
Colin and Alie when
they first got together
and (far left) Alie with
the children in 2010about the illness and fundraise for
stem-cell research into the disease.
By March 2016, Alie was using
a wheelchair, and I started
cutting up her food because
she struggled to use a knife
and fork. A few weeks later,
she started having difficulty
swallowing. She lost dramatic
amounts of weight, but when
doctors suggested a feeding
tube, she refused, determined
not to give in, and not wanting
to miss out on the occasional gin and tonic.
‘I don’t feel ill, I just can’t move,’ Alie said.
By that April, her speech began to
falter. Unable to communicate clearly, she
was frustrated, and Phoenix was the only
one who could understand her, somehow
able to translate what Alie said.
In May 2016, I took her to hospital to,
reluctantly, have a feeding tube fitted, as
she was weak and dehydrated. But when
the specialist came to see her, he said her
condition was deteriorating fast and it was
time to start saying goodbye.
As we crowded around
her bed – me, the kids, her
dad Brian, brother Austin,
sister-in-law Maureen, and
old friends – I held her hand
and we waited. ‘Am I dying?’
she asked. I choked as
I replied, ‘You probably are.’
I knew that she would want
me to be honest, and she seemed at
peace with what was happening.
Then her breathing laboured and she
managed her final words. ‘I’ve had enough
now,’ she whispered, before slipping away.
It was just five months after her diagnosis.
The next two weeks passed in a haze of
grief. I’m not sure how I got through it but
I did my best to remain strong for the kids.I knew Alie’s main concern had been that
I should make life as normal as possible
for them, so I took them on holiday to
New York in August last year. It was one
of the last places we’d been as a family
before Alie had fallen ill. We went to her
favourite shops and restaurants, sharing
stories of the things we’d done together.Brave to the end
I wanted to share our story to raise
awareness, as people know so little about
what a cruel illness MND is. If speaking out
helps with stem-cell research and finding
a cure, Alie won’t have died in vain.
It’s been three years now and still our
lives feel empty without her. She was
brave until the very end, but
I never wanted to show
her how scared I was for
a future without her. It’s
only now I can finally
let those tears fall.
l For more information,
visit aaa.uk.com‘I knew
she’d want
me to be
honest’
Phoenix and Jensen
with dad Colin in
New York last yearColin on an
All About Alie
fundraiser