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 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.
“I am feeling so much better as well because I am getting some sleep. When Kyra wasn’t sleeping I wasn’t able to get anything done at home – I usually do my housework at night but because I was having to go to bed with her I couldn’t get anything done. But now I am back on top of things and we are all doing so much better.”
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, and they expected her to go into a vegetative state.
“She is very bright but struggles with her communication, and can go from being so loving to be quite violent quickly.
“She has never slept properly but she was getting worse and worse, and pulling the foam out of her bed, and banging her head as she doesn’t know to stay in bed at night. But the charity have been amazing and the bed they’ve loaned - which basically looks like a massive travel cot, with a blow up mattress and mesh sides, means she settles so much quicker.”
The Newlife Foundation has a dedicated fund to help children in West Yorkshire. It has already provided equipment to 351 children in the county with equipment worth £416,031. But there are still 19 children who waiting for equipment totalling £19,804.
For more information or if you can help raise funds, visit www.newlifecharity.co.uk. The charity guarantees that 100 percent of the money donated to the West Yorkshire Fund will help children in the county.
Kyra Lodge is one of just two children in the world with a specific type of the blood disorder methaemoglobinaemia.
Commonly there are two strands, with type two being the more serious and usually being fatal within the first few years of life, and type one being more manageable.
Kyra and the other child, an Australian boy who the family are in constant contact with, falls somewhere between the two, leaving a lot of uncertainties.
She was two-and-a-half when she collapsed and tests eventually led doctors to diagnose the extremely rare hybrid form of the condition.