This December, my daughter Hayley will be turning 14. Like other girls her age, she’s a typical teenager – she can be gorgeous, she can be moody, she listens to The Wanted with the volume turned up too loud, watches Twilight and never tires of it, and she’s the queen of sleepovers with her friends. But unlike other teenagers, chances are that Hayley will have to spend her 14th birthday in hospital.
It wasn’t until she was three months old that my husband Mark and I thought there might be anything different about our daughter; she wasn’t feeding properly or putting much weight on, and I’d noticed a few lumps round her tummy as well as really tight skin – it looked like her stomach was wrapped in cling film.
I kept taking Hayley to the doctor but they said she was just a small baby. But when she was a year old and still the same size as a six month old, they started doing tests. A test for cystic fibrosis came back normal, as did all other blood tests, but then a skin biopsy revealed that her skin had very little elasticity in it – something which is associated with old age – and that’s when we were told that she could have Hutchinson-Gilford Progeria.
Progeria is a rare condition, characterised by the appearance of accelerated ageing in children – meaning their bodies age eight times faster than normal. Hayley was officially diagnosed with this condition that affects one in eight million children when she was two yearsold. On the day we were told Mark immediately went into research mode, wanting to find out everything he could, but I went into denial. I kept looking at pictures of children with Progeria on the internet and thinking that isn’t her, she doesn’t look like that, then looking at Hayley, the voice of the doctors echoing in my head.
“The life expectancy is 13,” they told us.
As I watched my daughter sleeping peacefully in her Moses basket, I just couldn’t believe it. ‘She hasn’t got that. She can’t have…they must be wrong….’ was all I kept thinking.
In the beginning it was incredibly hard. While I tried to stay strong, I was in shock and utterly devastated. I was 26 years-old and Hayley was my first child – the thought that she might not live long enough to become a troublesome teenager was too much to take. I was in a really dark place, but Hayley was the only thing that got me through it. Of course, she didn’t know what was going on, but seeing me sad she’d come up to me and rub my cheek, saying, “Mummy, what’s wrong?”
I’d do my grieving when she went to bed, as I didn’t want her to see me crying.
However, as the weeks went on, and with the support of Mark, our friends and family, I came to realise that we only had two options – when your life is torn apart you either sink into a horribly dark place or you try to make something positive out of it. And that’s what we did.
We got in touch with the Progeria Research Foundation in America, and with the Sunshine Foundation, the original wish-granting foundation in the US, which organises annual Progeria reunions for children and families affected by the condition. We took Hayley to her first reunion just six months after she was diagnosed. The week-long event was held in Washington DC, and Mark was really excited at being able to talk to other parents and get more information about things but, on the other hand, I thought it would be terribly depressing.
“I can’t go, everyone’s going to be sad, they’re going to be crying,” I kept on saying, right up until the day we left. But once we arrived my outlook changed. There were 27 children with Progeria at the reunion; and for them it was a never ending play-day of face painting and ball games. For the parents, there were all-important question and answer sessions with doctors and experts. The thing that struck me the most though, was how upbeat the parents and kids were.
As Hayley got older we tried to keep her life as normal as possible. She spent time with her grandparents, who doted on her, got more stubborn as children tend to do, and she liked dressing up as a princess. Of course, over time, her condition became more obvious. Her big eyes and frail features sometimes attracted the attention of strangers; people’s reactions to her were heartbreaking. She would be skipping along the street and we would see people turning round and walking back to have another look at her, but together we came up with a great way of stopping them in their tracks.
“Mummy, can I do it?” she’d say with a cheeky grin.
“Go on then,” I’d reply, and she’d stick her tongue out at them.
They’d look away embarrassed as we’d walk off, giggling.
And that’s the thing about Hayley; we’ve always tried to bring her up with no airs and graces. Like any mum, I was naturally worried about her starting school. After spending all my days with her and knowing that our time together was precious, I felt like I wanted to be with her all the time – why should the school have her for six hours a day? But we wanted her to have a normal life, and she was so excited about going to school – she made friends with children in her primary school who she is still best friends with to this day.
Over the years Hayley asked different questions about her condition, and although we told her she had Progeria, she didn’t initially grasp what that meant. We judged telling her about certain things depending on what she was ready to hear – the older children get and the more grown up questions they ask, the more they are ready to know. So, one day she would ask why she didn’t have any hair, and we’d explain that “it’s because of the Progeria (children with Progeria lose their hair, eyebrows and eyelashes from about the age of two onwards) and it makes you extra special.” However, a turning point came when her best friend Maddie, who also had Progeria, passed away. It was one of the worst days of my life. I stood at the door of our house with the key in the lock for 20 minutes not knowing what to say.
“Your friend was really tired and she has gone to sleep; she has gone to heaven,” I explained.
I think that that was the moment Hayley really understood what Progeria meant for her. She was just seven years-old at the time.
Thankfully, one of Hayley’s biggest traits is her positivity. When Maddie passed away, Hayley would tell me that she had come to see her in her sleep or would ask me if Maddie could come shopping with her. It was one of the most traumatic things that Hayley has ever dealt with, but she found an inspiring way to make sense of it. Even today, while she is waiting to have a hip operation which will probably mean she’ll spend her birthday in hospital, she is still strong. At 13 her body is that of someone over 80, and she is currently completely immobile – she can’t move, she can’t walk, and she has a little Zimmer frame.
Once the operation is over, we have some clinical trials coming up next March, which involve taking a course of tablets that the doctors’ hope will help Progeria children. This will be her third trial, and when someone offers you something like that, you just grab it with both hands. Hayley is keen to be involved in them because she knows it could make a real difference to her and to others. I’ve tried hard to make sure she gets to do the things she wants to and raise awareness of the condition. We have done documentaries on the subject, which helped three other families get their children diagnosed, and through raising awareness she’s been to lovely places like Egypt and Florida and got to swim with dolphins. Her book, Old Before My Time: Hayley Okines’ life with progeria, is now available and it’s not only for Progeria children but for all disabled people, sending the message out that no matter what, you’re a person, and you should always try to look to the future.
The future for us now is to first get Hayley’s operation out of the way and to have her home for Christmas. This year, Hayley has told me she wants one of those Flip Video Cameras that you plug into a laptop, and we recently got a puppy that she named ‘Boo’, like the character from Monsters Inc. As for me, my Christmas wish is always the same: to have my little girl as healthy and happy as she can be.