When doctors told Kerry Okines her baby daughter Hayley was suffering from a rare ageing disease and she was unlikely to live beyond the age of 13, she initially decided she would end both their lives.
But 12 years after the shock of discovering her baby was one of only 40 children in the world suffering from the rare genetic condition Hutchinson-Gilford progeria which makes her age eight times faster than normal, Kerry has turned her negative feelings into positive action and become an inspiration for mums all over the world.
Everything was perfect when Hayley was born on December 3 1997, a healthy baby with a thick mop of brown hair. But by the time Hayley reached her first birthday and was barely the size of a three-month-old baby Kerry started to worry and after a referral to Great Ormond Street Hospital and six months of exhaustive tests, a skin biopsy finally confirmed that Hayley was suffering from progeria, a disease which affected just one in eight million children.
‘When the doctor first confirmed that Hayley had Hutchinson-Gilford progeria, I remember the whole room became a blur, Kerry recalled. ‘At that time there was very little information available about the condition and only 40 other known cases in the world. Hayley’s dad Mark and I were shocked when we looked on a friend’s computer and saw photographs of children who looked like old people.
‘I remember asking the doctor ‘What’s the prognosis?’ to be told that the life expectancy was 13. When I heard that I collapsed on the floor, like someone had just pulled the carpet from under my feet.’
‘For months after the diagnosis, I harboured thoughts of death,’ Kerry confessed. ‘I was living one day at a time, expecting each day to be Hayley’s last. The burden was overpowering. If my baby could never live a long and healthy life, then why should I? I felt guilty that I had planted this ticking time bomb inside Hayley and I was the one who should be punished. I planned to kill us both. I mapped it all out in my head that I would drive us both out to a well-known local suicide spot at Beachy Head and put a hosepipe through the car window and drift away. But when I looked at little Hayley’s big blue eyes and smiling innocent face I realised I couldn’t go through with it.’
Although she didn’t know it at the time, Kerry was suffering from depression and her suicidal intentions led to a nervous breakdown.
But with her family’s support, Kerry recovered and decided to make every day of Hayley’s life a happy one. Never accepting that Hayley’s life would be limited, Kerry and her now ex-husband Mark set about devoting all their energy into finding a cure for her daughter’s terminal illness and making her dreams come true.
Through their charity Hayley’s Hope Kerry and Mark have raised money to bring all the known progeria children across Europe together for an annual holiday, they have taken Hayley on holiday to DisneyWorld, Florida and arranged for her to meet her celebrity idols from Kylie Minogue and Girls Aloud to Justin Bieber and The Wanted.
In 2007 they were offered a lifeline to take part in a series of pioneering drug trials in Boston, USA, which Kerry believes has helped to extend Hayley’s life beyond the average expectancy of 13. In December Hayley celebrated her 14th birthday and later this year she hopes to take part in another pioneering drug trial in France, which she hopes will also improve Hayley’s life expectancy.
Thanks to their campaigning and their drive to publicise progeria through television documentaries and magazine interviews, more children have been identified with the disease. There are now four known children in Britain and 74 children in the world. And Kerry and Mark have added to their family with two other healthy children Louis, nine, and Ruby, six.
When Kerry and Hayley recently published their autobiography Old Before My Time (Accent Press), their story touched the hearts of many mothers across the world. Inspired by Kerry’s honesty, other mums have said how their story has helped them to face their own tough times.
‘I have always hoped that Hayley would prove experts wrong and she has,’ said Kerry. ‘Whenever I look at her and see how happy and well-adjusted she is it, I am always reminded of those early days when I wanted to take both our lives. Now I am so glad I never carried out my plan. I would have robbed her of an extraordinary and long life. Hayley would never have made the good friends she has or met all the famous people and other special children.
‘But I am also aware that every day could be the last I have with her. I try not to think about it but I can’t help myself. I have tried to give Hayley as normal and full a life as possible. I want to give her everything she wants but there’s a fine line between making her happy and turning her into a spoilt brat.’
‘When we first came to terms with progeria doctors warned us that heart attacks and strokes were the biggest problems. Thanks to all the drug trials Hayley’s heart is strong but we never thought that her mobility would be an issue.
Despite her lack of mobility, Hayley will be making sure her mum feels special this Mother’s Day and is planning a meal out at a local restaurant with her brother, sister, aunt and cousins.
Kerry said: ‘Every Mother’s Day is special for me. I keep all my Mother’s Day cards from all the children in a memory box. But every year I never know if it will be the last one I get from Hayley.’
Adapted from Old Before My Time: My Life With Progeria by Hayley and Kerry Okines Published by Accent Press Ltd, price £9.99. ISBN: 9781908192554