When Eve Hayes was born, there was nothing to suggest she was anything other than a healthy baby girl.
But, five months in, her parents began to notice the symptoms of what was eventually diagnosed as Rett Syndrome.
The rare disorder, which is more common in girls, affects the brain and can lead to serious health problems in later life.
Mum Louise Park admits that she and her partner, Gary Hughes, do find caring for the 16-year-old has its challenges
But the 42-year-old said life would be a lot more difficult for the family without the help of the Children’s Hospice Association Scotland (Chas).
This week marks the fifth anniversary of the charity’s at home service in Aberdeen.
Miss Park, of Aberdeen city centre, said: “Chas At Home is an absolutely great out-reach service, it’s just lucky for us that we can access it locally.
“The ladies who work here are only ever a phone call away when you need advice and support.
“They have helped us out plenty of times over the years, it can be things like staying by her bedside when she has been in hospital locally to allow us to re-charge our batteries or allowing me to attend a dental appointment.”
Eve’s disorder first became apparent when she failed to reach the expected developmental milestones of someone her age.
She was clinically diagnosed at two, but genetic testing confirmed the disorder at four.
Eve also has epilepsy and scoliosis – which causes the spine to curve – which means she has to rely on a ventilator to breathe.
As a result of this, she requires care overnight, which is provided by NHS nurses.
Miss Park, who works as a part-time travel consultant, added: “Because they have been coming to our home for so many years they know Eve really well.
“You can go out with the knowledge that she’s being well looked after but, at the same time, know they would call you if anything was going wrong, it really does give us great piece of mind.
“They don’t just come to the house to care for Eve, they bring her toys and games they know she would like.”
Miss Park said that the service has become a “lifeline” to the family over the years.
“It’s become an absolute lifeline to us, I think without their service life would definitely be more challenging than it already is on a daily basis, caring for someone like Eve requires a lot of work,” she added.
CHAS AT HOME
There are 13 people helping to run the Chas At Home service in Aberdeen.
The team is currently working with 24 families as well as a number of bereaved parents and siblings.
Included in the team is nurse Muriel Graham, who has been a part of the service since it was first launched.
The 50-year-old said every day is different for the nursing team, and they can be involved in anything from carrying out one-to-one care to accompanying families on outings.
She said: “There’s a lot of fun and laughs when we do respite visits but there can also be visits but there’s also a lot of sadness too.
“A lot of the parents are desperate for your visits and most of them say ‘if only you came more often’.
“We’re always busy, but most of the parents would like more frequent visits.
“It’s a real privilege if the family wants you and trusts you to be there at the end of their child’s life.”
Meanwhile, Fiona Reid is a Diana Nurse, who helps coordinate care for children with families and other health professionals across the north and north-east.
Diana Nurses, named after the late Princess of Wales, were introduced to help develop care for terminally-ill children in Scotland.
There are currently three working for Chas across the country.
Mrs Reid has been involved in child nursing since she worked as a community nurse in the Highlands in the early 1990s.
She said: “Similar posts are not available outside of Chas, we have got a single focus, it’s difficult to achieve that within the NHS.
“The rewards come from seeing the difference you can make to families’ lives through all the different services we offer.
“Whilst I cannot change the diagnosis I can certainly have an impact on how a family cope with it and the grieving process at the end of it.
