Caring relatives of Penicuik teenager with life-shortening condition walk 1.8 million steps for CHAS

Ava Young (13), who has quadriplegic cerebral palsy as well as epilepsy and scoliosis curvature of the spine, lives with mum Fiona and dad Keith. Ava, who attends Saltersgate School in Dalkeith, cannot walk or talk, has to be fed by a tube and requires round-the-clock care.

Because Ava and her family have been supported by CHAS (Children’s Hospices Across Scotland) for the past 11 years, some of their relatives - Morag Macgregor-Jones, Diane Mcluskey, Louise Hale, Annabel Wallace and Kirsty Mackenzie - decided to sign up for the charity’s 280,000 Steps in February challenge to say thank you for the care Ava has received.

The determined five-strong team raised an impressive £2,381 after walking 1,835,187 steps in total.

Fiona said: “We are so proud of our family members for taking on this challenge and raising so much money for CHAS and children like Ava across Scotland. We would also like to say a huge thank you to everyone who kindly made a donation.”

Ava receives special care through the CHAS at Home service and also enjoys respite visits to Rachel House, which Fiona says is her ‘favourite place in the whole world’.

“We know she loves going there as she always starts squealing with joy in the car soon as we approach the hospice. It is a special place for all 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!”

Even though she can’t walk or talk, Fiona says that Ava can express herself by either giving a little smile or responding with her eyes.

“She loves the Jacuzzi, music therapy sessions and just being made a fuss of really and we all love the long lies we get there!”

So great is the family’s love for Rachel House that Fiona and Keith decided to renew their vows there for their 20th anniversary in 2019.

“We did it on Valentine’s Day and it was so special,” Fiona recalls.

“The nurses helped to dress Ava in her flower girl dress and decorated everything to look like a wedding room. 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 and the chaplain conducted the ceremony.”

Unfortunately, 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 provided by the charity and continue to receive CHAS at Home care.

Fiona said: “Sadly, Ava’s health has deteriorated a lot in recent months and we are so grateful to CHAS for being there for us now and through everything we have gone through before.

"When Ava was born the doctors did not expect her to survive

but here we are 13 years later and she is still battling on – we are so proud of our wonderful daughter and are determined to make the most of every precious moment we have left together.”

CHAS Challenge Events assistant, Charlie Leavy said: “We are so grateful to Ava’s family for collectively completing the 280k steps challenge and for totally smashing their targets and raising so much for CHAS.

"This money will help so many children with life-shortening conditions like Ava across Scotland as well as their families who need our support now more than ever.”