Source: Daily Mail >> Read full article and comment
By AMANDA CABLE
Last updated at 1:56 PM on 30th March 2010
The Daily Mail in association with Bupa has launched the Carer of the Year Awards to celebrate the hard work of carers of all ages. Here, we tell the story of a devoted father looking after his daughter with a rare condition that is slowly robbing her of her life. If you know someone who dedicates their life to care for others, nominate them for the awards using the form below . . .
The home video taken on ‘s second birthday says everything about this cherished child’s life. The toddler is squealing with delight as she rips open her presents. When she blows out the candles on her birthday cake, her proud parents start clapping. That’s where the video ends and where Isabel’s life, as she knew it, also ended.
Within 24 hours, this seemingly healthy toddler lay down on the sofa, crippled with stomach pains. Today, almost two years later, she has lost the power of speech and much use of her arms and legs. Struck by a cruel genetic condition, this little girl is slowly diminishing.
And tending to her needs 24 hours a day is her devoted father, Neil Annakin, 38. ‘I look back at the video of Isabel’s party and take in every detail: the way she spoke, how she laughed and the way we used to joke she’d be such a handful when she grew up,’ he says.
‘It was the last time we were truly happy. Perhaps the cruellest thing about that video is that she has never been able to play with the toys she received for her birthday.’ Isabel was an unplanned baby, but the most marvellous ‘mistake’ in her parents’ lives.
Fatherly love: Neil Annakin, with his daughter Isabel, who has lost the power of speech and much use of her arms and legs after being struck by a cruel genetic condition
Neil, a fisherman from Bridlington, E. Yorks, and his partner Karen, 40, had been together for four years when she discovered she was pregnant. ‘I was thrilled to be a father for the first time. My only worry was that Karen suffered from severe bouts of depression from time to time,’ says Neil.
‘But I thought that if I was there to love and support her, we’d be a perfect family.’ On May 5, 2006, their happiness was complete with the arrival of Isabel. ‘She was beautiful from the moment she was born,’ says Neil. ‘When I pushed her in her buggy down the street, people would stop me to tell me how gorgeous she was. ‘But it wasn’t just her lovely eyes and perfect skin. Isabel had a smile and a laugh for everyone. She was a golden child.’
When Isabel celebrated her second birthday, Neil shot the video footage he now treasures. ‘She was walking, talking and just loving life. I remember joking I’d be vetting all her boyfriends when she was older,’ says Neil. ‘But the next day, she just lay on the sofa, clutching her stomach and screaming in agony. I took her to the GP, who said it was probably trapped wind.
Over the next two months, I went to the doctor again and again, but was sent away with Calpol and Ibruprofen. I was convinced something was wrong, but everyone thought I was neurotic.
‘It was like a living nightmare, because no one else could see she was changing. Isabel stopped laughing, and was in so much distress she stopped talking, too. ‘She started to vomit after every meal, so I began to liquidise her food. Then she lost control of her arms and legs. ‘One day, I was so desperate I rang NHS Direct and was told to take her to Scarborough Hospital, where they did blood tests. We were called back three times for more tests.
‘Finally, in September 2008, we were sent to Bridlington Hospital to see a consultant. I was hopeful they might find the problem and be able to cure it. But the first thing he said was: ”She has Metachromatic leukodystrophy and it is not good news.”
‘He explained it is a genetic condition that affects just one in 40,000 people. Karen and I were carriers of the defective gene.
‘I fell to pieces. I couldn’t drive home. I just sat at the hospital, holding Isabel in my arms. … Continue reading
