There for us at the worst of times
The death of a child at any time is every
parent’s worst nightmare. But imagine
losing your child during this national
pandemic.
So far this year, over 40 children from
Merseyside, Cheshire and North Wales
have relied on Claire House Children’s
Hospice for end of life care and the numbers
continue to grow.
Charlie: our precious boy
Andy and Sarah Rooke’s son, Charlie, died
at Claire House at the end of February aged
17 months, just as the seriousness of the
pandemic was beginning to hit the UK.
“Charlie was diagnosed with Spinal
Muscular Atrophy Respiratory Depression,
an ultra-rare and despicable disease, in
November last year,” explained Andy.
“Our son was in intensive care with a
life-threatening condition. It was a high
stakes game and we had to make sense
of what was going on which is where
Claire House was so vital for us.”
It should have been a happy time for the
family as Sarah was also pregnant with
another son, Thomas, but Charlie’s sudden
diagnosis had serious implications for the
unborn baby and genetic testing was
urgently carried out.
“The outcome wasn’t good as Thomas
had the same condition as his brother, and
while we were trying to make difficult
decisions about Charlie, we were also
faced with the death of Thomas who was
born asleep,” said Andy.
“I struggle to find the words to describe
the support we received from Lesley and
Laura from Claire House at that time. As
we were losing Thomas, I was also
attending meetings about end of life care
for Charlie who had appeared to stabilise
and I wanted to fight for my son; we
wanted to have more time with him, just a
few more weeks, and Claire House helped
us to make that happen.”
The family began to write their ‘bucket list’
for Charlie, simple things which would
create special and happy memories for
them to look back on.
“We had endless photos taken and made
keepsakes with Charlie’s hand and
footprints.” said Andy.
“Leaving hospital for the first time in 10
months to have a little party for Charlie at
Claire House Liverpool was an unforgettable
experience. Sarah wanted Charlie to feel
the wind on his face, in fact it was also
drizzling as we walked to the car so he felt
the rain on his skin for the first time,” said
Andy. “Simple things became so important.”
Towards the end of February, knowing
that time with Charlie was very short,
Lesley and Laura pulled out all the stops to
create the final, perfect day for the family.
The Rookes moved into Claire House and
the team arranged a visit to the Blue Planet
aquarium, the one trip on the bucket list
they hadn’t yet ticked off.
“That morning we woke up, the three of
us, after spending our first night in 10
months together in the same bed.”
said Andy.
“We were driven to Blue Planet, the
nurses stayed with us in case anything
happened and it was such an enjoyable day
that we didn’t want it to end.”
Charlie passed away later that day in his
parents’ arms and the family stayed at the
hospice for another week to be supported
by the nursing team and bereavement
counsellors, who were able to help with
funeral arrangements which were becoming
increasingly strict.
“I said from the word go that I would
never let my son suffer and Claire House
helped us to make sure the end of Charlie’s
life was peaceful and pleasant,” Andy
continued.
“Without places like this, our situation
would be close to impossible.”
Become a Claire House Hero
by giving a regular donation
If you would like to give a regular monthly gift to Claire House of £5
per month and become a Claire House Hero, please visit our website
clairehouse.org.uk/donate or call 0151 343 0883 for a leaflet today.
By giving £5 a month your money could go towards a call with
a specialist nurse to help parents look after a child at home.