Seven-month-old baby genetically engineered in a lab to help beat an incurable disease
Baby Amelia Queen, aged seven months, was genetically engineered in a laboratory to help beat an incurable disease which has blighted her family. Her birth is one of the first in Britain which is hoped will help eradicate devastating Huntington’s disease from not only the newborn but from future generations of her family.
Mum Juliana, 37, inherited Huntington’s from her dad Jacky, 59. She’s watched helplessly as his condition – which causes dementia and tremors – slowly takes him over.
After discovering she had a 50% chance of passing the terminal condition on to her children, Juliana and husband Graham, 50, a lawyer, applied to take part in pioneering genetic screening treatment at Edinburgh Royal Infirmary.
They lost their first baby but were “determined to carry on” with pre-implantation genetic diagnosis – a process that involved Juliana having her eggs fertilized and the Huntington’s-free ones frozen ahead of conventional IVF treatment.
“It took 18 months from retrieving the embryos, selecting healthy ones and then undergoing IVF, to becoming pregnant,” said Juliana. The embryo which became Amelia was kept in liquid nitrogen and kept in cold storage. She was “a back-up” option, revealed Julia. And one that was needed after the first pregnancy failed.
“I can only hope my determination for a healthy baby gives other women in my position hope to do the same,” she added. “I am telling my story to raise the profile of Huntington’s and tell other parents there is now hope of releasing their children from inheriting the gene.” The way forward is not to bury your head in the sand but to drive hard for research and breakthroughs.”
Now, cuddling her baby at home in Newlands, Glasgow, the former estate agent turned charity volunteer, says she’s delighted she went through with the ground-breaking treatment.
“We are happy beyond belief,” Juliana said hugging her bundle of fun.” Doctors managed to stop the gene and prevent it from being passed down. “We have been so lucky to benefit from this wonderful advance in science.” A new generation of children can be born free of something which has affected my family for so long.
“Without this amazing technique I would never have gone ahead and had a child, because I desperately want to avoid passing on the gene.” Amelia is a wonderful baby who won’t have to face an uncertain future. What more could any parent want for their child?
“We can’t thank the doctors enough for all the wonderful research and work which has made this possible.” As a busy new mum she doesn’t have time to dwell on how her life might turn out as a carrier.
But she knows from caring for dad Jacky which symptoms to look out for. “I just want to enjoy those precious years of motherhood and pray for a breakthrough treatment for Huntington’s patients,” she added. Dad Graham, 50, is overjoyed.
“We feel amazingly lucky to have Amelia. Juliana has been so brave to endure all that it took to have our baby.” I feel like the luckiest guy in the world,” he added. “We just hope for a breakthrough for Juliana.” Following Amelia’s birth, one of the most emotional moments came when Jacky met his granddaughter for the first time.
“He adores Amelia and sings to her all the time,” she added. Juliana’s specialist, Dr Mary Porteous, clinical geneticist, is herself amazed how far genetic science has come. She confirmed Amelia is the unit’s first baby and the first to be born to the technique in Scotland.
She said: “I have amazing respect for parents who endure all the medical intervention to have a healthy baby. “From 15 to 20 eggs we produced two healthy embryos. One is used and the other is stored in liquid nitrogen at -70C in case the first pregnancy isn’t sustained.” We have managed to produce a handful of healthy pregnancies which potentially break the hold Huntington’s has had over their families for generations.
“Sadly, not all result in successful pregnancies, but for those who achieve a healthy baby, the joy is immense.” When I started working in genetics, screening for Huntington’s was so far on the horizon.
“But this is a great step forward for the NHS to provide such a valuable service.” It is a privilege to work with families to help them achieve healthy babies. “Quite humbling, when you realize what they have to cope with in life.”
Last year it was revealed two sisters were the first in the UK to be “genetically designed” in a lab to beat Huntington’s. Rosie and Daisy Mulchinock were also born from embryos that were screened by scientists to ensure they would not suffer from the disease.
Mum Karen, from Derby, said at the time: “It’s a disease that devastates families, and to have eradicated that disease from this family by using this technique is wonderful.