SIXTEEN-month-old Harrison Walker has only spent three weeks of his short life at home in Bieldside, Aberdeen.
Kirsty and Cammy Walker’s wee boy has spent most of his short life in hospital.
It is suspected that the tot has atypical mitochondrial disease and he is awaiting a home care package at Aberdeen Sick Children’s Hospital.
Harrison spent his first three months in the neo-natal unit in Aberdeen but, due to breathing difficulties, he was flown to Edinburgh.
Kirsty (30), who is originally from Banff, and Harrison spent 10 months in the capital’s sick children’s hospital where he was fully ventilated. They returned to Aberdeen in January.
Cammy (29), who is originally from Laurencekirk, splits his time between the hospital and Angola – where he works one month on and one off – in the oil industry.
While the Walkers wait for a home care package, Kirsty has been offered respite from her 24-hour care duties by the Children’s Hospice Association Scotland (CHAS) at Rachel House.
Wee Harrison’s condition is life-limiting but the Walkers want to make the most of their time together.
Kirsty said: “We’re hoping to get the home care package in place by the end of May.
“Harrison hasn’t yet been diagnosed but he can’t be left on his own at any point.
“He has problematic secretions which cause him to choke; he doesn’t have a gag reflex and can’t swallow so he gets manual and oral suction to clear his airway.
“He needs round the clock care and daily physio to keep his airway clear.”
The wee one’s brain is also not growing which results in a host of problems.
Kirsty said: “He’s fed through a tube in his tummy.
“He can’t hold his head up or grab things or do anything normal babies would.
“He’s also partially sighted; his eyes are in good order but his brain does not process the signals properly.
“As a result, he really does need help with everything.”
Harrison arrived just under nine weeks premature and doctors originally put his problems down to that.
But after an MRI scan in Edinburgh, his parents received the devastating news that their wee boy had a life-limiting condition and were referred to Rachel House.
“When we were first introduced to CHAS and Rachel House, we were told that Harrison might not have that long,” said Kirsty. “That was in September last year but he’s still with us.
“We don’t know what the future holds but we take each day as it comes and let him guide us.
“Rachel House gives us quality family time, instead of being stuck in hospital.”
Kirsty and Cammy have nothing but praise for the staff and volunteers at Rachel House, where they spent their first Christmas together.
Kirsty said: “The staff and volunteers are amazing.
“As soon as you walk in, it’s like a home from home – it doesn’t feel like a hospice.
“We’re going to a wedding in June and we can go away that weekend with complete confidence that Harrison will be in safe hands.
“So much goes into caring for Harrison on a daily basis, it’s a massive thing for us just to get a wee break.”
CHAS at Home staff also visit Harrison in hospital and will provide support to the family when the wee one does finally get home.
“Even now, the CHAS at Home team are making a huge difference to us,” said Kirsty.
“We don’t like leaving Harrison alone in hospital but we have complete confidence in the CHAS staff, which allows me and Cammy to go out for a wee while.”
Kirsty worked in oil industry recruitment but had to resign to look after their first baby full time.
She has had huge support from her mum and dad Ian and Isobel Paterson and Cammy’s parents Rena and Graeme Walker, of Marykirk.
CHAS at Home will play an ongoing role in their life.
Kirsty added: “We’re really looking forward to getting Harrison home, knowing we have that support there.”