Why I want an IVF baby to screen out gene that made me go blind

Blind content creator and TikTok star Lucy Edwards says she's "so excited" to be on a health kick to undergo IVF for gene editing purposes, but reveals the dilemma she faced in deciding to screen out the very gene that made her blind. "I'm so broody," the 29-year-old tells theBBC Access All podcast. Lucy and her husband Ollie married at Kew Gardens two years ago and are now ready to start a family - but there are complications to consider. Lucy has the rare genetic condition Incontinentia Pigmenti (IP) and lost her sight due to this aged 17, just months after meeting Ollie. The condition runs through the female line - Lucy's mum has IP although isn't blind, her Grandma did too and her great-aunt was blind in one eye. Lucy is totally blind, but, if she had been a boy, she may not have survived. The abnormal IP gene is located on the X chromosome. Women have two X chromosomes, while males have X and Y, meaning the appearance of the gene can be more catastrophic in male pregnancies. "My grandma actually had nine miscarriages," Lucy says. This is one of the facts that played into the complicated decision Lucy and Ollie made to opt for pre-implantation genetic testing, a special type of IVF where embryos are created outside of the body and screened for the genetic condition. Only those embryos which are not affected by the condition are placed back into the womb. Without medical intervention, Lucy says there would be four potential outcomes to any pregnancy she carried: A healthy and unaffected boy or girl, an affected boy she would likely miscarry or who would be born with severe brain damage or an affected girl. She pauses, then laughs: "That sounds horrible, doesn't it? That's me." And that's the quandary. IVF will edit out the very thing that has made Lucy who she is today - a journalist, advocate, author and broadcaster. It is an emotive topic of debate. The most well-known conversation is around Down's syndrome and the number of women who choose to abort a pregnancy once their baby is tested and diagnosed as having the condition. The question is around the value people place on other peoples' lives which may not look like our own. In 2021 campaigner Heidi Crowter, who herself has Down's syndrome, challenged legislation allowing foetuses with the condition to be aborted up until birth. She took her case to the High Court arguing the rules were discriminatory to disabled people who could live a good life. She lost the case and the subsequent argument she made at the Court of Appeal. The European Court of Human Rights (ECHR) later rejected it as well, but Heidi continues to campaign to have the law overturned. It is something Lucy is very aware of and she and her husband have spent a long time considering. "It's understanding that it is removing that part of me that makes me, me," Lucy says. "It's such a personal decision and I know that I'm opening myself up for possible designer baby discussions, but I know I'm doing it for the right reasons." Lucy says first being diagnosed with IP and then losing her sight as a teenager were both traumatic events and she wants to minimise the likelihood of miscarriage to limit any future traumatic load. She says she found it impossible to "knowingly" consider having a baby naturally once she knew the science was available to give a baby the healthiest start possible. "If I had a baby and, unknowingly, I had a gorgeous, gorgeous baby with disabilities, I would be so thankful, so happy and amazed but knowingly having this gene? That's why we're having IVF." IP doesn't just cause blindness, it can also cause severe epilepsy and more difficult outcomes. Lucy says having the option to ensure complications were not passed on felt like both a responsibility and a privilege previous generations did not have. "Whether we like it or not, we have to be responsible here. Maybe a responsible issue for you, if you have IP or another genetic disorder, is to have a child naturally and we are not judging you in any shape or form, this is just our decision." In response to their openness around this decision comments were overwhelmingly positive from Lucy's fans which she thinks might be because she is so "disability positive" in her everyday life - "I love being blind," she frequently states. But Lucy says responses have been different around the world. When she was working in Japan and her content was reaching audiences unfamiliar with her story, she faced a lot more trolling. "I got a lot of abusive comments that go into my spam filter questioning why I would be a mother," she says. "I know that I'm going to get a lot of abuse, but I'm just going to block them. "I'm going to be OK. All I think about is the other mothers that have come before me who are competent, capable and resilient." Lucy, who is known for her How Does A Blind Girl... series of videos, is overjoyed by the prospect of IVF but she has also been frank about the fact she currently does not qualify, owing to her current weight, a sensitive element of IVF treatment that many keep to themselves. NHS guidelines specify your Body Mass Index (BMI) must be 30 or under to qualify - a healthy BMI is considered to be between 18.5 and 24.9. "I need to be a BMI of 30 and I'm very open that I need to lose 9kg," Lucy says. "I've already lost 15kg." Her health journey has involved swimming, lifting weights and many runs with Ollie tethered to her as her sighted guide. She has also found a love for batch cooking nutritious meals which she posts about on all of her channels on Instagram, TikTok and YouTube and the workarounds she has developed as a blind cook. "I wanted a positive representation of losing weight online because it's all about this blinking jab," she says, referring to weight loss injections. "I just wanted to lose it healthily, have lots of nice food, talk about meal prep and just smile and run." Once she hits the required BMI, Lucy will qualify for three rounds of IVF on the NHS. She will contact her consultant, after which she has to "spit in a cup" and offer up her DNA for genetic testing and analysis. Over a period of about three months, a genetics team will "make a bespoke test to find the gene within my eggs," Lucy explains. Meanwhile Lucy will inject herself with trigger shots to stimulate the follicles within her ovaries to increase the number of eggs produced which will be retrieved, and then made into embryos with Ollie's sperm. The embryos will then be tested so only ones without the IP gene will be possible candidates. Those embryos will be "shuffled about" so Lucy and Ollie don't know which will be selected in terms of gender or other genetic qualities, and implanted into Lucy, who will carry the baby to term. Lucy can't wait for the moment she holds her baby in her arms. "It will never stop being a thing within my mind that this gene is being eradicated," she admits. "But I am very happy in my decision." A few days ago Lucy posted on Instagram, her cardigan tightened at the back with a hairband to make it smaller and fit. "I've lost so much [weight] that my clothes are too loose now so we had to tie it up with a bobble," she tells her followers. "Fingers crossed [we're] only a few weeks away from ringing the clinic." You can listen to Lucy Edwards onBBC Access Allon BBC Sounds. Subscribe and email your thoughts to accessall@bbc.co.uk