Loving dad’s 
marathon climb

By James Millar LITTLE Maia Davenhill celebrated her third birthday last week. The family living-room is lined with colourful birthday cards from friends and family and one huge one signed by all her playgroup pals. Maia’s birthday is particularly special as her mum and dad, Marina and Anesti, don’t know how many more she’ll have.  For Maia has Aicardi Syndrome, a neurological condition which affects only girls. There are just a few hundred cases worldwide.  It was first identified 35 years ago, but even today relatively little is known about it. When Maia was diagnosed, the doctors couldn’t give her parents any idea how long she would live.  Very few sufferers survive to see their 20s. The disease stops the brain developing properly. It has left Maia blind with no control of her head and unable even to sit up on her own.  She will never walk or talk. Her blindness means she doesn’t sleep well and suffers frequent seizures.  But Maia is a sparky wee girl with a winning smile. And her parents have no complaints as they go about administering her 24-hour care.  Mum Marina says, “She’s a good girl and she smiles a lot. She’s sociable and she can hear well so she likes to be chatted to.” But it can be hard. Marina adds, “There are days when I’m in town and I see mothers who were in hospital at the same time as me with their children. It’s difficult all the time, but those are the very bad days.” Constant caring Rachel House provides a break for Anesti and Marina from the constant caring they have to provide for Maia. “You don’t realise how much energy Maia takes up until you get a break. She doesn’t sleep well and we have very few nights uninterrupted sleep so you feel like you’re in a constant daze,” says Anesti.  “At Rachel House we can relax and get a good night’s sleep knowing Maia is in good hands and we won’t have to get up and feed her, make up her medicine or change her nappy.” The Davenhills are right behind The Sunday Post’s fund-raising campaign. Marina says, “People don’t realise how important the work at Rachel House is.  “You think it’s the sort of thing that only happens to other people. It isn’t. It can happen to any family. We only realised after Maia was born what an incredibly wonderful job they do there.  “People only tend to become involved once it’s happened to them and that’s not how it should be.” Anesti showed his backing for our campaign with a superhuman effort . Raining heavily  Last Sunday he scaled one of Scotland’s most famous peaks to raise funds for the hospice and another charity, the Lomond Early Stimulation Association (LESA). Most Scots have heard of The Cobbler in the Trossachs and many have climbed it. But three times in a day? And running?  Anesti is a keen hill-runner and member of Shettleston Harriers running club. But this challenge tested him to the limit. “The weather was really, really bad,” explains Anesti. "On the first run it was raining heavily and the paths were like rivers. I’d to change my shorts after each climb because I was soaked to the skin.” He started out at 10 am and finished the run just over five hours later. In running The Cobbler three times Anesti covered the equivalent of 8672 feet but he didn’t falter with the thought of Maia to spur him on. Despite the weather CHAS supporters turned out at the foot of the hill and raised over £100 from the few hardy walkers that passed by.  That took the brilliant total Anesti has raised to over £1000. He adds, “Scotland really needs a second children’s hospice.  “It makes a massive difference to us but there are only a limited number of beds.  “With a second hospice so many more people could benefit.”

You can e-mail us at: hospice@sundaypost.com