‘You just look at him, a tiny little baby, and you think, how could this happen to him?’ says Nicola Wilson. ‘How can the world be so cruel? It wasn’t: why me? It was more: why him?’ Nicola is talking about the moment her then three-month-old son Noah was diagnosed with cystic fibrosis (CF). Caused by a single faulty gene that leads to complications including lung damage, malnutrition and bone disease, the average life expectancy of a person born with CF is around 35. So you can understand why Nicola’s first reaction was despair.
But since then Nicola, who has lived in Dubai for 19 years, has got proactive. And a mark of that is this week’s 65 Roses Charity Ball and Auction at the Park Hyatt. The event (which will auction off some impressive items including a Manchester United shirt signed by the whole team and limited edition footballs signed by Thierry Henry) has been organised by Nicola to raise money for gene therapy research in the UK. Right now, there is no cure for CF, but gene therapy research hopes to change that. It aims to find a safe and effective method of replacing the defective gene that causes CF with an intact gene. Which means a cure for two-and-a-half-year-old Noah is conceivable.
‘If the research goes well, that could be something that significantly increases Noah’s life expectancy in five or 10 years’ time,’ says Nicola. ‘As a mother I have to be involved in that. I can’t sit back and wait for the cure to come to us. I have to do everything I can for him.’ Nicola’s friends and family have already raised thousands of dirhams for the cause – her sister trekked in Peru, her brother ran the Belfast marathon, and her best friend’s husband completed the London marathon. That, together with the cash raised at this week’s ball, could make all the difference to Noah’s future if the research proves successful. ‘In a way I felt totally powerless with regards to Noah’s condition,’ his mother confesses.
‘But [by raising money for the research] I feel like I’ve taken some of the control back because I can actually do something about it.’ Advancements in science have increased the life expectancy of CF sufferers considerably over the past 40 years. In 1964 it was just five years of age. Now it is more than six times that figure, thanks to new medication and an improved understanding of the disease. This makes the possibility of finding a cure all the more promising. ‘I have to be hopeful, there’s no other way for me to be,’ says Nicola. ‘I can’t not feel hopeful because, if I did, the pain would be too overbearing… We’re very hopeful that Noah’s life expectancy will go up and up and up.’
Noah’s diagnosis was an accident. A friend of his mother came to visit one day, who just so happened to be a midwife. Upon seeing Noah’s size – he was small for his age, but doctors had assured Nicola and her husband there was nothing to worry about – she started asking questions. Then she recommended they take Noah to see
‘There’s probably a lot of undiagnosed cases here, because it’s not something that’s mandatory-screened for at birth, whereas it is in the UK,’ Nicola says. ‘These children might not be diagnosed, not treated the way they need to be, and perhaps pass away at a young age and it might be put down to something else.’ It could have happened to Noah.
As such, the 65 Roses Charity Ball and Auction (‘65 roses’ is how many children with CF mispronounce the disease) also hopes to raise awareness. For a baby to be born with CF both parents must be carriers of the faulty gene. A baby born to two carriers has a one-in-four chance of having the disease. You can be screened for the gene, but if you and your partner find that you are both carriers, what then? ‘There’s not a lot you can do, it’s a personal choice,’ Nicola admits. ‘But at least you can make an informed choice. There’s a form of IVF where they can implant embryos that are non-CF. It’s an incredibly expensive procedure but it’s an option. At least people can have all the options on the table and they can decide what’s right for them.’
Noah has already received a lot of support from people running marathons and clambering through the wilds of Peru. Now the people of Dubai can help him by having a nice dinner and bidding for some prizes. The money goes towards the research, and then Nicola will wait. What will she do while she waits? ‘Enjoy every day, really,’ she says. ‘Noah’s such a delight and every day is a journey of new discovery for him. It’s so wonderful being able to see it through his eyes.’
For more information about how you can help the 65 Roses event please call Nicola on 050 553 9069 or Melissa on 050 459 9431. Alternatively email firstname.lastname@example.org.