When Newtonmore nursery pupil Evelyn was born she suffered from a lack of oxygen and blood flow to the brain that left her with cerebral palsy, severe epilepsy and other complex needs.
Three years on the brave youngster now needs to be tube-fed and is both visually and hearing impaired.
She is the love of her parents’ lives, however they admit that her medical care needs can cause them to “burn out quickly”.
Her mother Grace Dennison White said: “We love Evelyn to bits, but her medical care needs are extremely physically and mentally exhausting, which can cause us to burn out quickly.”
The family are extremely thankful for the support of family, friends, and the charity (Children’s Hospices Across Scotland) CHAS, which offers both respite and holidays for Evelyn, her mum and her dad, Tom.
In fact, Grace says that without the support the family receive from CHAS they would find it hard to get the care they need to live a “normal” family life.
‘Limited respite in the Highlands’
Praising the dedicated support the hospice charity provides for their daughter, the couple have also raised concerns about the lack of respite in the Highlands.
They have been supported by specialist nurses in their own home for the past 18 months, and they regularly enjoy stays at Rachel House Children’s Hospice in Kinross.
Donations to the charity are vital after the charity reported a 25% increase in specialist support requests from families of children with life-shortening conditions.
This year, the charity has launched a Christmas Memories Campaign in a bid to raise £12million to continue to deliver its services.
Grace, who is Evelyn’s full-time carer, said: “There is limited respite in the Highlands and employing carers is extremely difficult due to our location.
“Without CHAS we wouldn’t be able to access any respite support at all which is why we are backing this important campaign.
“We are so grateful for the support from CHAS as it gives my husband Tom and I time together, to rest and reset.”
She continued: “While at Rachel House Evelyn is so well cared for, meaning I can just be her mum and not her nurse, physiotherapist, administrator…
“When we are there I am finally able to just stop, relax and catch my breath.”
CHAS is a lifeline
As well as Rachel House, the family are given hands-on regular support from the CHAS at Home team who they describe as “an absolute lifeline”.
Grace continued: “The carers are fantastic and such a support to us both physically by giving me a few hours a month to step away from my full-time caring role and also a listening ear and advice on where to turn for any additional support.
“CHAS is also able to support families in so many other ways including discussing financial support, advice and applying for funding through its Family Income Maximisation Service.”
‘Good health’ wish for Evelyn this Christmas
This Christmas, the family are looking forward to a stress-free, quiet time at home together if Evelyn remains well enough.
Grace said: “We hope to watch Santa and the Cairngorm reindeer come through our village, do some Christmas-themed activities and go for nice winter walks together.
“If I had a Christmas wish it would be for good health for Evelyn.
“You worry about a lot of things when you have a child with complex needs which is why we are so grateful to have the support of CHAS not just at Christmas time but throughout the whole year.”
Iain McAndrew, a CHAS director, said: “The breadth of support we offer simply would not be possible without our generous supporters who give love and strength to those in the greatest need and we hope that this Christmas people will consider donating what they can to our festive appeal to help us ensure that no-one has to face the death of their child alone.”
To donate to the CHAS Christmas Memories Appeal please visit: www.chas.org.uk/appeal