I grew up in Leeds with my parents, my older brother and later on my foster brother Scott, who has Down’s syndrome. I think growing up with a brother with Down’s probably made me a better person. You develop a compassion and understanding for those whose experience is different from your own. This probably has something to do with me going into teaching and I’ve taught children with special educational needs since the mid-1990s. I now live in Birmingham with my husband Martin and our daughters, Francesca and Claudia.
I was born with a significant heart condition, which we later learned was caused by Noonan syndrome. This is a genetic condition that can cause heart problems, distinctive facial features, small stature and specific learning difficulties such as dyslexia. But symptoms vary widely and so does its severity – some people may never know that they have it. It’s estimated that as many as one in 1000 people are born with Noonan syndrome. It can be hereditary or appear by chance, as it did in my case.
I have a couple of the more severe symptoms, I suppose. I had heart surgery when I was four years old and then again when I was 33 years old. My last surgery was three days after my daughter’s second birthday, which was hard. At four feet nine inches tall, I have proportionate short stature, a form of dwarfism. I also have dyslexia and wonder if I have other specific learning difficulties as well. Although the genetic cause of Noonan is known in many cases, in my case it remains a mystery.
Despite these challenges, I live a happy life and I’m proud of what I’ve achieved. My condition hasn’t stopped me doing anything, except reaching the top shelf in the supermarket! I went through an angry phase when I was younger, but am at peace with who I am and I think dealing with Noonan has given me more confidence and strength to tackle life’s other challenges. I sometimes think my condition is harder on my family than it is on me – they can’t help worrying about me.
When my husband and I started thinking about having children, it was obviously a really serious decision. There was a 50-50 chance that my children would inherit Noonan syndrome. After a lot of soul searching, I decided that it was worth the risk. But I really pushed my husband to think long and hard about whether he wanted to have children with me. I didn’t want him to just say ‘yes’ because he loved me and hoped for the best.
So far as we know, neither of our daughters have Noonan syndrome. Because the gene that causes my case is unknown, we can’t test them to know for sure. I wonder if Francesca has a very mild form, though. There are subtle signs, but then it’s easy to see what isn’t there. Not every trait is necessarily linked to Noonan.
I first met another person with Noonan syndrome some years ago. There’s something powerful about meeting someone with the same genetic condition, you can identify with their experience and bond over challenges. I heard about the citizens’ jury via Genetic Alliance UK and decided to get involved.
Before the jury, I didn’t really know much about editing of human embryos or have a strong opinion about it. I’m a bit of a fence-sitter by nature. But by the end of the jury, I went from a neutral opinion to being in favour of parliamentary debate about potentially changing the law to allow editing of human embryos to treat genetic conditions. I felt well-informed and empowered after hearing from experts and other’s whose experience differed from mine.
One thing I feel very strongly now is that open and honest debate needs to happen about editing of human embryos, because it is incredibly complex. I think about my brother Scott and how the world would be less rich without people like him in it – he is so much more than a person with Down’s syndrome. We shouldn’t automatically seek to remove difference, even if it scares us, because the less we see it the less compassionate we become as a society.
I think personal choice is key. If I could go back in time and had the option, I wouldn’t chose to edit my embryos. But I understand that my daughters might want to have that choice, because there’s a chance they have Noonan syndrome and could pass that on to their children.
The citizens’ jury has been an incredibly powerful and inspiring experience, it’s an amazing tool for debating complex issues. The danger, I think, is that nobody pays attention and that our thoughts have no influence in the end.