Anya Behl has a rare condition called alternating hemiplegia of childhood (AHC), a neurological complication which can cause numbness or full loss of feeling and movement.
It can result in paralysis and muscle rigidity in either side of her whole body, which can last for weeks at a time, meaning she needs round-the-clock care from her parents Abhishek and Katherine at their Edinburgh home.
However the family have been able to go on emergency respite stays at Rachel House hospice in Kinross, run by Children’s Hospices Across Scotland (CHAS).
Anya’s mother, said: “Early on in lockdown, our support network had stopped due to Covid and we were beginning to struggle, so we got help from CHAS at Home. We’re lucky to have them.
“We didn’t want anyone coming in at first, then realised that the team would be wearing full protection, taking every precaution, and it would be a huge help. We get a rest, a good natter with other adults and Anya has really thrived from seeing people.
“They were the ones who suggested that Rachel House might be right for what we were going through – Amanda and Julie timed it so that they could be there to welcome Anya to Rachel House, to get her used to the place.
“Anya’s eyes light up when she sees her. It’s lovely to see. Amanda obviously has all these years of experience, so the connection she was able to make was immediate. They’ve been a great help, not just to Anya, but to us too.
“We didn’t think we would have much living space and that social contact would be impossible, but it was the perfect set-up for Anya. Having one-to-one care from staff is also wonderful.
“There’s only so much you can do when you’re shielding if you haven’t got the support; having this homely environment where everything can be kept safe means the world.”
Many things can trigger AHC, from heat and dehydration to pain and lack of sustenance, with Anya needing to be ventilated in an intensive treatment unit six times in her life so far.
Last May her symptoms worsened and left the family “broken with fatigue”, but her parents were able to use the quiet room at Rachel House while she recovered and was then able to play in the sensory room, with access to the garden and a bedroom full of toys.
The charity begun what is thought to be Scotland’s first virtual hospice to help support children and their families remotely.
Iain McAndrew, CHAS director of fundraising and communications, said: “Over the last year, our supporters have stood by CHAS families, giving them strength and showing love in what has been an incredibly tough time for all.
“It’s certainly not been an easy journey but without that support, and our amazing staff and volunteers, we simply could not have continued to evolve and adapt our services, helping those in greatest need. CHAS was a lifeline for so many.
“Our summer campaign is continuing our ask from Christmas 2020 – that everyone who can, supports Scotland’s most vulnerable children and helps us keep the joy alive even in the face of death.”