Until recently, the hope of a good night’s sleep was nothing but a dream for eight-year-old Kyra and her mother Heather Land.
The youngster from Fitzwilliam, near Pontefract, is just one of two children in the world with an extremely rare blood disease as well as cerebral palsy and a developmental delay, all of which make her restless and agitated and she was only managing a couple of hours’ sleep a night.
The situation had got so bad that little Kyra had damaged her specialist care bed in frustration, ripping the padding from the foam mattress and was eating it, putting her at risk of choking. The only option was for her to share a bed with Ms Land.
That was until a charity which provides specialist equipment for disabled children and those with terminal illnesses, the Newlife Foundation, stepped in, loaning her a ‘safespace’ bed where Kyra can rest safely and peacefully at night.
Ms Land, 27, said: “The difference it has made is just incredible – Kyra is sleeping eight hours a night and will go to bed willingly. She is getting up in a better mood because she is sleeping well. Before, I was so tired I just wanted to burst into tears and the lack of rest was making Kyra grumpy as well.”
Kyra, who goes to Kingsland School in Wakefield, suffers from an incredibly rare form of methaemoglobinaemia - a blood disorder which affects how oxygen is carried around in the bloodstream.
It has meant she has been poorly since birth, with a blue-hue to her skin and other symptoms such as shortness of breath, headaches, dizziness, an aversion to exercise, fatigue and loss of consciousness.
She has so far defied doctors, who at first believed the condition was terminal. However, she has complex health needs, uses a wheelchair and can only eat pureed foods. Ms Land said: “She’s astounded them. There were times when they said she wouldn’t live to four years old.”