A family living with HD is celebrating a special milestone – Amelia, the daughter they barely dared to dream they would have, has started at ‘big school’.
Proud parents Juliana Queen, 42, and her husband Graham, 55, took the excited five-year-old to join her primary one classmates at Glasgow Academy earlier this week.
In 2014, Amelia made medical history as the first baby at Edinburgh Royal Infirmary, and one of the first in the UK, to be born following pre-implantation genetic diagnosis (PGD) treatment.
The technique involves testing embryos for the HD gene before implantation, which takes place in much the same way as conventional IVF treatment. It meant Juliana and Graham could have their baby girl knowing that Amelia had not inherited the HD gene from Juliana’s side of the family.
Speaking after her first school run, Juliana said: “Amelia loves primary school already, it was a big moment for all of us and we were so proud to see her settling in so well on her first day.
“To have Amelia is just wonderful, she is amazing, bright, enthusiastic, funny and cheerful. She is very special and Graham and I do tell her that a lot. We are extremely proud of our daughter, and we are proud to have been part of such a significant medical advance that offers such hope to people with HD and other inherited genetic conditions.
“The science is amazing. If we hadn’t known about PGD, I would have missed out on so many important steps in my life. It helped me to realise that I’m brave enough to try for a family and to talk about and accept my HD. And, of course, becoming a mother to Amelia, which is the best thing ever.”
Juliana was just a little older than Amelia is now when she first became aware of the symptoms of HD. It was during a hospital visit to her late paternal grandmother and Juliana remembers feeling quite scared by her gran’s behaviour at the time.
“When I was 25, my dad John started to show symptoms of HD and his behaviour began to change, so I decided it was time to find out about me. I went through the testing process and was told that I have the gene,” said Juliana.
“It was a very difficult time for me and for my parents, but then I decided that life was for living and that I would try to do something positive. I was working as a medical rep at the time, and wasn’t really enjoying it, so I decided to take six months out to think about my future,and to find something that I did enjoy.
“That was when I went into estate agency, which I loved, and I did that for a number of years. I met my husband Graham through my work, and when I told him about my HD diagnosis he was fantastic. He has been an amazing support and has helped me to muster all of my strength and confidence to talk about the disease and to embrace life in every way.
“Huntington’s disease is an ugly and difficult disease; its symptoms are not well understood or accepted. For example, people with HD are often accused of being drunk because of their speech, erratic movements and behaviour.
“I help to care for my dad and Graham and I are very open with everyone, including Amelia, about HD. We’re optimistic about the future and by talking about HD and sharing our experiences and fundraising for SHA as a family, we’re helping to raise awareness about this serious disease.”