THE family of a little girl forced to sleep every night in a hospital bed because of her rare breathing condition has launched a massive drive to raise funds for the Sick Kids Hospital.
While most children head straight home after school, brave Aine Farrer, five, goes to hospital each evening because she suffers from a rare condition which causes her to stop breathing in her sleep.
It could be months before measures are put in place which will allow the plucky youngster to sleep in her own bed. But – despite the tumult and uncertainty – we can reveal her selfless family have launched a huge campaign to raise essential funds for the Royal Hospital for Sick Children, in Sciennes Road, where Aine is treated.
Mum Leah said: “The money is going to be split between the Sick Kids Friends Foundation and a fund for Aine’s future. NHS Lothian will be paying for her home care, but if, for example, we ever want to go on holiday, we need to pay for a carer to come, and for a portable ventilator.”
Aine was diagnosed with Congenital Central Hypoventilation Syndrome after falling ill just after Christmas. The Strathesk Primary pupil, who lives in Penicuik with her mum, step-dad Tommy Forbes, and siblings Finn, 11, Ruari, nine, Conal, seven, and Erin, two, has remained in hospital since. When she returns home in November, she will require an overnight carer to ensure the oxygen mask she will have to sleep in for the rest of her life remains in place throughout the night.
Although she has recently been allowed to return to school, she must go back to the Sick Kids’ high dependency unit every night until funding for home treatment can be allocated, which means mum Leah returns to the hospital each night, too
Full-time mum Leah, 37, said it had been a long battle to even get to this point. She said: “When Aine was three weeks old she spent three weeks in intensive care following an incident where she stopped breathing. When she was discharged, we were told the doctors were unsure exactly why it happened. Then everything was normal until the day after Boxing Day last year, when she became very lethargic.”
Over the next six weeks, Aine was tested for a number of conditions, including meningitis, but everything came back negative.
Leah said: “They then told me they’d be testing her for CCHS. I was advised not to, but I looked it up online and immediately knew that was it. All the symptoms fit.”
Having already raised more than £6000 by taking a team of 25 to the Edinburgh Kiltwalk in May, the family are now set to raise even more by taking part in September’s Speyside Kiltwalk, starting in Buckie and finishing in Aberlour.
Dorothy Hanley, chief nurse at the Sick Kids, said: “We are very grateful for the generous donation from Aine’s friends and family. The money will be used to support children, young people and their families during their time in hospital.”