“The sensory room helps her feel safe and relaxed and having the right equipment for children like Lana is essential.” – Jemma, Lana’s mum.
With four brothers, life can be pretty hectic for 8-year-old Lana, who has attended short breaks at St Oswald’s Hospice Children and Young Adults Service since 2018.
The monthly four-night breaks give mum, Jemma, and dad, Aaron, the chance to spend more quality time with Lana’s siblings while their daughter accesses specialist care and a range of fun activities at the hospice.
Lana has a rare genetic condition that causes epilepsy and global developmental delay. She is also non-verbal, non-mobile and requires 24-7 care.
“There are only 22 cases of this genetic condition worldwide so they don’t know much about it,” Lana’s mum, Jemma, added.
During the night, Lana can suffer from seizures and needs to be constantly monitored. She also requires her position to be changed several times and she sleeps on a specially adapted bed at home.
Lana’s complex needs mean her family must be on high alert during her sleeping hours.
“It’s always a disturbed night for us as we need to make sure Lana is okay and is in the right position,” Jemma added.
The devoted mum admits she was nervous when Lana started attending short stays at the hospice, but the team helped to reassure her that her daughter was in safe hands.
The care team decorate each bedroom with themed duvet covers and pictures to help the children or young adults settle into their short stays.
“They put lovely pictures on the walls in Lana’s room and there’s a television, which she loves to watch,” Jemma described.
Mum revealed that one of Lana’s favourite places in the hospice is the sensory room, which has a range of lights and music to engage the youngster.
“Lana loves the bubble lamps. I think it’s the contrast of lights. They seem to really relax her. She also loves listening to music.”
Asked if she has a message for the team who cares for Lana at the hospice, Jemma’s message is simple: “Keep up the good work!”
