Love and laughter
give
her boys extra years of life
 “They
used to be able to say ‘Mum’ and ‘Dad’ — now they can’t even
manage that.
Heartbreaking
“It’s
a heartbreaking illness and children who have it aren’t expected to live beyond 12.
My Robert is a fighter, and I think the support and fun he and James enjoy at Rachel House
have given him extra years of life.”
Knew instinctively
Ali and
her husband Graham have four boys, 16-year-old Graham, Robert, James and nine-year-old
Martin. They live in Newbridge, near Edinburgh.
The
couple knew instinctively when Robert was born that there was something wrong with him.
“There was a look about his eyes which just wasn’t right,” says his mum.
Incredibly, it took eight years before doctors diagnosed his rare genetic condition.
When
James was born five years later he had also inherited the disease.
“Our doctors weren’t very supportive,” says Ali. “They thought I was a
fussing, paranoid mother, but our health visitor listened to my fears and when James was
three we had to accept our two boys had this fatal illness.”
Ali and
Graham set about learning how to care for them. They have to do everything for them. The
day begins early as they feed Robert and James by tube, wash and dress them.
A minibus
takes them to Oaklands Special School, which they love. In the evenings the boys like to
listen to music — Oasis and Eminem — in their rooms and watch videos. But the
highlights of the year are the times they spend at Rachel House.
“Our boys always get a warm
welcome from the staff. They joke and laugh with them and have such patience. Robert and
James visibly relax as soon as we cross the threshold.
“The
first thing you hear is laughter, then comes the good smells of baking from the kitchen.
There is a hydraulic bath and the boys enjoy lying in the hot bubbles. Another big
favourite is the Sensory Room where the lights and special effects are absolutely
brilliant.
“The
staff kneel beside our boys on the mats and stroke their limbs while they watch the
changing lights and shapes play across the ceiling. Robert and James can’t
communicate easily, but I know from their reactions that they are happy.
Time short
“Time
is short for both of them and I’m so grateful they are making the most of every day
they have. I must admit when it was first suggested that we bring our boys to Rachel House
I was a bit wary. My mum died in a hospice and I associated these places with older
people.
“But
everything is so bright and cheerful here and geared towards the individual needs of
children. Every member of staff spends lots of time with the kids and gets to know how
they’re feeling, what worries them and what makes them happy.
“You
expect that kind of care from a mum — but everyone here is like a mother to the
children. There’s all the love in the world to go round.”
Ali Ness
sees it as part of her job to fight to make life better on a daily basis for her boys.
She has
campaigned to get motorised wheelchairs, an extension to their council house and equipment
to help with their care.
“It’s
only when your child is handicapped that you realise how hard it is to get authorities to
meet their needs. I’ve learned not to give up.
“But
when they are at the hospice, I don’t have to struggle because my boys are cherished
for who they are. They’re seen as people, not just patients with a disease.
“They
know and accept that they are dying. As their mum I find it unbearably hard to know that
some day I’ll have to let them go.
“But
it’s the best comfort in the world to know that at Rachel House every moment is
precious.” You can e-mail us at:
hospice@sundaypost.com
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The Sensory Room is a favourite
with Robert and James.
