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A dad whose daughter has a rare genetic condition affecting her bones, joints and muscles has described the care she receives from East Anglia’s Children’s Hospices (EACH) as a “godsend”.
Amaya Leighton has Larsen syndrome, and her family – parents Alex and Samara and brothers Korben and Xander – have been supported by the charity since 2018.
The ten-year-old loves spending time with the care team at The Nook, and, despite having separation anxiety, has built her way up to having overnight stays at EACH’s Norfolk hospice.
It means Alex and Samara can take a well-earned break, allowing them to spend precious time with Korben, 12, and Xander, two.
“In the early years of Amaya’s life, it was very difficult to get the support we needed,” said postman Alex, 39.
“Then EACH came into our lives, and it’s made the world of difference ever since.
“Amaya started with six-hour home care sessions, when EACH was still based at Quidenham, and it gave us a chance to do things with her big brother, Korben.
“Without that, it was so hard for us to give him the time and attention he needed and deserved. Amaya’s care was so intense he didn’t get a look in.
“However, all that changed thanks to the home-care sessions, and it was a godsend, to be honest.
“From there, Amaya started having day-care sessions at The Nook, following its opening in November 2019.
“We then started staying overnight, as a family, which meant we got the best of both worlds.
“Amaya had separation anxiety, so it was hard for us to leave her for long periods of time, but it meant we could pop out and do things with Korben.
“Those stays were great, and now we’ve hit a real milestone, whereby Amaya is happy to stay overnight on her own.
“She loves it and enjoys giving the staff the runaround!”
Amaya’s condition affects her joints and has led to severe muscle weakness. She uses a wheelchair and has lots of trouble sitting up unaided.
Before birth, it was detected there might be a problem and she may have club foot. After being born, her feet were facing completely out, and she was ‘scrunched up’.
She also has breathing problems, and there were major scares during the early weeks of her life, including her stopping breathing while in the car one day and Alex and Samara having to call for an ambulance to take her to James Paget Hospital, in Great Yarmouth.
Then there was another occasion when she stopped breathing again, had to be taken to hospital and then blue-lighted to Addenbrooke’s Hospital, in Cambridge.
She had a tracheostomy fitted after two months, but it was removed last July.
In addition to Amaya’s care, Korben also enjoys attending special sibling days, organised for the brothers and sisters of children receiving care from EACH.
“It’s great for him and something he thoroughly enjoys, because it allows him to spend time with other children his age – youngsters in a similar situation, with similar things going on at home,” said Alex, who lives in Gorleston.
“Those days are a great help, and, as a family, I honestly don’t know what we’d do without EACH.
“Amaya’s care allows us to go out and do things, temporarily stepping away from our responsibilities as fulltime carers.
“It’s very strange when she’s not at home, especially overnight, because one of us always has to sleep in her room with her.
“However, it allows us to recharge our batteries, and we know she’s in safe hands, being looked after by some amazing, friendly, helpful and supportive people.
“We have complete trust in them and, over the course of time, have built up some fantastic relationships with the team.”
Published in February 2025
