A Kinross children’s hospice has been described as “the best place in the whole world” by the family of a young girl with a life-shortening condition as it marks its 25th birthday this month.
Ava Young has been supported by staff at Rachel House for the past 11 years and also receives specialist care from the CHAS (Children’s Hospices Across Scotland) at home team as she cannot walk or talk and has to be fed by a tube.
The 13-year-old has quadriplegic cerebral palsy, epilepsy and scoliosis curvature of the spine and has spent her whole life fighting to stay alive after doctors initially believed she would not survive long after birth.
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Despite all her difficulties, Ava’s mum Fiona and dad Keith are in no doubt that their little girl gets very excited whenever the family make the journey to Rachel House from their family home in Penicuik.
Since opening in March 1996, Rachel House has helped hundreds of babies, children and young people with life-shortening conditions and their families.
“It’s definitely her favourite place in the whole world and we know this as she always starts squealing with joy in the car when we get near it,” Fiona said.
“It’s a special place for all three of us because we have been going there for over a decade and every time we visit we are made to feel like family.
“I still remember the first time we went - we were quite nervous because the word ‘hospice’ makes you think it might be a sad place but we couldn’t have been more wrong.
“It was light and bright and joyful and everyone was so welcoming and friendly that we didn’t want to leave!
“Ava loves the Jacuzzi, music therapy sessions and just being made a fuss of really and we all love the long lies we get there.
“Ava shows us she is happy by giving a little smile or responding with her eyes and she does that a lot at Rachel House.”
So great is the family’s love for Rachel House that Fiona and Keith decided to renew their vows there for their 20th anniversary on Valentine’s Day 2019.
“The nurses helped to dress Ava in her flower girl dress and decorated everything to look like a wedding room,” Fiona recalls.
“Our niece, Ellen, was also a flower girl and took charge of pushing Ava’s wheelchair and making sure she was OK.
“CHAS staff made lovely canapés for us and played the piano while the chaplain at the time conducted the ceremony – the whole day was really special.”
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Sadly, because of the ongoing pandemic, Ava and her family have not been able to visit Rachel House since October 2020 but they have been enjoying the virtual hospice services and still receive CHAS at Home care.
Fiona said: “We know CHAS is always there for us and just at the other end of the phone and we look forward to visiting again one day soon.
“We would like to say congratulations to everyone at Rachel House for reaching such a special milestone and we will always be grateful to all the staff for the invaluable care they have given to our family and countless others over the last 25 years.”
CHAS director for children and families Sue Hogg, who has worked at Rachel House since it first opened, said: “I feel very privileged to have been part of CHAS from the very beginning and to have met so many lovely and inspirational families like Ava’s.
“I love my job just as much today as I did then and everything I do is about ensuring CHAS gives the very best care and support we can.
“I have had the privilege of working with many fantastic people over the years and am very proud that I still work with many lovely colleagues who have been at Rachel House from the very start, just like me.”
