Lucy Edwards, a journalist and advocate, has taken a bold step forward in her journey to motherhood by deciding to undergo IVF treatment. Her area of research is in screening for the rare genetic condition Incontinentia Pigmenti (IP). This unique congenital condition has left her totally blind since the age of 17. Her decision reaches much further than personal disclosure. It is a condition which is seen through the lens of a maternal legacy of the disease that has affected the females in her family for generations.
Incontinentia Pigmenti down the female line in Edwards’ family. Although her mom has IP and does not go blind, her grandmother went blind from the same disease. On top of this, her great-aunt experienced vision loss in one eye. This ancestry of congenital blindness has deeply informed Edwards’ experience with motherhood and the burden of transmitting DNA.
“Whether we like it or not, we have to be responsible here,” Edwards stated, reflecting on her decision to screen out the gene associated with her blindness. This proactive planning for families is desperately needed today. She and her husband, Ollie, are looking forward to raising their family in Traverse City.
To qualify for IVF on the National Health Service (NHS), Edwards must achieve a body mass index (BMI) of 30 or under. At the moment, she is about to be 9 kg short of meeting this goal. To get her body ready for IVF, she’s undergone a fitness transformation. This new way of life entails changing their diets and exercising daily.
Edwards has been honest and open to share the personal struggles she endures as she grows and learns on this new path. Since making her decision, she has faced backlash from the general public for choosing to screen embryos for the genetic condition. “I got a lot of abusive comments that go into my spam filter questioning why I would be a mother,” she said. Even with all this toxic energy, she’s still positive on her decision and committed to ignoring the nasty vibes.
Edwards proudly proclaimed, “I know that I’m going to take a lot of shit. I’m prepared to be their defense attorney. Her dedication is evident as much in her hope as in her toughness. She tirelessly builds momentum to ensure that future generations do not experience the same obstacles she has navigated.
“It’s understanding that it is removing that part of me that makes me, me,” she acknowledged, weighing the emotional implications of her choice. And though many might consider this an unpopular decision to make, Edwards reminds us that it’s the individual’s choice. “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,” she explained.
Edwards has expressed her belief that with advancements in science, there is an opportunity to give children a healthier start. “I found it impossible to ‘knowingly’ consider having a baby naturally once I knew the science was available to give a baby the healthiest start possible,” she said. Her vision for her future family would be to ensure complications that arise with her genetic condition weren’t being passed on.
“Having the option to ensure complications were not passed on felt like both a responsibility and a privilege previous generations did not have,” she remarked. Edwards is acutely aware that her decision will be monumental. It means something to her family, herself and her daughter, but for all the families who will struggle with these genetic disorders.
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