RNIBThe creator of blind content and star of Tiktok, Lucy Edwards, says she is “so excited” to be in a health kick to submit to IVF for the purpose of edition of genes, but revives the dilemma that confronted the deciding the gene that made it blind.
“I am so melancholic,” says the 29 -year -old to the BBC Access All podcast.
Lucy and her husband Ollie married in Kew Gardens two years ago and are now ready to start a family, but there are complications to consult.
Lucy has the rare genetic condition Incontinentia Pigmenti (IP) and lost his eyes due to 17 years, just a few months after meeting Ollie.
The condition crosses the female line: Lucy’s mother has IP Althegh is not blind, her grandmother did and her great aunt was blind in one eye.
Lucy is totally blind, but, if a child had a leg, he 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, which means that the appearance of the gene can be more catastrophic in male pregnancies.
“My royal grandmother had nine involuntary abortions,” says Lucy.
This is one of the facts that played in the complicated decision that Lucy and Ollie did to opt for genetic tests prior to implementation, a special type of IVF where embryos are created outside the body and detected for genetic condition. Only those embryos that are not affected by the condition are replaced in the uterus.
Without medical intervention, Lucy says that there would be four potential results for any pregnancy he would carry: a healthy and not affected child, an affected child who would probably like or who would.
She pauses, then laughs: “That sounds horrible, isn’t that?
And that is the dilemma. The IVF will edit that the same has turned Lucy who is today: journalist, defender, author and broadcaster.
It is an emensive theme or debate. The best known conversation is around Down syndrome and the number of women who choose to abort a pregnancy once their baby is tested and diagnosed for having the condition. The question is around the value that people grant in the lives of other people who may not resemble ours.
In 2021, the activist, Heidi Crowter, whose own has Down syndrome, challenged the legislation that allows fetuses with the condition to be aborted to birth. She touched her case before the Superior Court arguing that the rules were discriminatory for disabled people who could live a good life. She lost the case and the subferent argument she made in the Court of Appeals. The European Court of Human Rights (CEDH) also rejected it, but Heidi continues to campaign to overcome the law.
It is something that Lucy is very conscious and she and her husband have spent a very time consultation.
“It’s understanding that what part of me is what it does to me, I,” says Lucy. “It is such a personal decision and I know that I am opening for possible discussions for designer babies, but I know that I am doing it for the right reasons.”
Lucy says that IP was first diagnosed and then lost his sight when he was a teenager they were molten events and wants to minimize the hood of the probability of spontaneous abortion to limit any future traumatic load.
She says it seemed impossible to consider “knowingly” having a baby naturally once he knew that science was available to give a baby the healthiest beginning possible.
“If I had a baby and, without knowing it, I had a beautiful and beautiful baby with disabilities, it would be very grateful, so happy and amazed, but with this gene knowingly. That is why we have IVF.”
The IP not only causes blindness, but can also cause severe epilepsy and more difficult results. Lucy says that having the option to guarantee that complications were not transmitted was felt as a responsibility and privilege that previous generations did not have.
“We like it or not, we have to be responsible here. Perhaps an answer problem for you, if you have IP or other genetic disorder, is to have a child naturally and do not judge it in any decision.”
In response to its opening around this decision, the comments were positive to Lucy’s fans, which believes it could be because “positive disability” in his life in Emeryday: “I love being blind,” he says frequently.
But Lucy says the answers have been different worldwide. When he worked in Japan and its content reached the public that was not familiar with its history, it faced the trolling much more.
“I receive many abusive comments that enter my spam filter asking why it would be a mother,” he says. “I know I’m going to get many abuses, but I’m going to block them.
“I will be fine. All I think is in the other mothers who have come before me that are competent, capable and resistant.”
Getty imagesLucy, who is known for her, a series of Girl Videos … Girl … is delighted with the perspective of the IVF, but also has Franco on the fact that she currently does not qualify, due to the weight of the current, a sensitive element of the IVF Treatment or the IVF treatment.
NHS guideline specy Its body mass index (BMI) must be low to qualify: it is considered that a healthy BMI is between 18.5 and 24.9.
“I need to be a BMI or 30 and I am very open because I need to lose 9 kg,” says Lucy. “I’ve already lost 15 kg.”
His health trip has involved swimming, lifting weights and many races with Ollie tied to her as a sightd guide. He has also found a love for the lots that cook nutritious Meals that he publishes on all his channels on Instagram, Tiktok and YouTube and the solutions he has developed as a blind cook.
“I built a positive representation of losing weight online, it is this flashing soap,” he says, referring to weight loss injections. “I just wanted to lose it in a healthy way, have a lot of good food, talk about meal preparation and just smile and run.”
Once you reach the required BMI, Lucy will describe for three rounds of IVF in the NHS.
He will communicate with his consultant, after which he has to “spit in a cup” and sacrifice his DNA for genetic tests and analysis.
Approximately a period of approximately three months, a genetic team “will make a voice test to find the gene inside my eggs,” explains Lucy.
Meanwhile, Lucy will inject shots to stimulate the follicles into their ovaries to increase the amount of eggs produced that will be recovered, and then become embryos with Ollie’s sperm.
The embryos will be proven so that only without the IP gene will be possible candidates. These embryos will be “shuffled” so that Lucy and Ollie do not know which will be selected in terms of gender or other genetic qualities, and implanted in Lucy, which will take the baby to term.
Lucy can’t wait for the moment he holds her baby in her arms.
“It will never cease to be in my mind that this is what this is eradicated,” he admits. “But I am very happy in my decision.”
A few days ago, Lucy published on Instagram, her cardigan adjusted on the back with a band to make the band smaller and in shape.
“I have lost so much [weight] That my clothes are too loose now, so we had to tie it with a bobble, “he tells his followers.
“Crucked fakers [we’re] Just a few weeks after touching the clinic. “
You can listen to Lucy Edwards in BBC Access All In BBC Sounds. Subscribe and send an email to your thoughts to accessall@bbc.co.uk
