The York parents of a one-year-old girl born with a rare condition that means she has no eyes have said their daughter “has changed our lives for the better” and helped them appreciate life.
Margot Duffy-Moss has a rare condition called bilateral anophthalmia, meaning her eyes and optic nerves never developed in the womb.
Her parents Laura and John have been watching her learn new skills and surpass “all of our expectations” with the help of the Guide Dogs charity.
Margot’s parents did not initially notice their newborn daughter’s condition, although her birth had been “fairly dramatic”, Ms Duffy-Moss, 37, a school administrator, said.
“John delivered her at home on the floor unexpectedly – that wasn’t something that was planned. So the labour came on quite quickly but our labour ward was full and they couldn’t accept me,” she said.
Mr Duffy-Moss, 33, a manager at York Theatre Royal, said: “They put a midwife on speaker and she talked me and Laura through what we had to do, basically.”
“It was only a number of hours later that we really had a proper good look at her because there was all the commotion of the ambulance then arriving and then getting to hospital,” Ms Duffy-Moss said.
“I was holding her and I just said to John ‘John, do you think everything’s OK, because something doesn’t feel quite right?’”
After Margot was seen by a series of paediatric doctors, one of whom tried to prise open her eyes with small metal clamps, she was referred to a specialist paediatric ophthalmologist.
It was not until Margot was four days old that she was diagnosed with bilateral anophthalmia.
Beautiful inside and out
Describing the period of time after the diagnosis, Ms Duffy-Moss said: “It sounds such a horrendous thing to say now because Margot is so beautiful, and she has changed our lives for the better, but at the time it was extraordinarily traumatic, the whole situation feels like a trauma.”
Once the news had sunk in, Mr Duffy-Moss began contacting professionals to learn more about how to support Margot.
Guide Dogs has been supporting Margot since she was just 12 weeks old, making her one of the youngest children the charity has worked with, with the family working in particular with staff member Kate.
“Kate called us the day after John made the referral and then, the next week, she was at the kitchen table, having a cup of tea with us, saying everything is going to be OK, and she has just been incredible,” Ms Duffy-Moss said.
It will be a “long time” before Margot interacts with the charity’s guide dogs, Mr Duffy-Moss said, but in the meantime the charity is teaching her essential tasks such as learning to stand up, move about, and develop her core strength.
“The only way that I can describe Margot is beautiful inside and out. She’s so happy,” Ms Duffy-Moss said.
“I think that she has taught us so much and she has changed our world in a way that we appreciate life and appreciate the very small things in life far more than we previously did.”
Mr Duffy-Ross added: “We haven’t found anything that she doesn’t like.
“She’ll sit next to her sister, just touching things, anything, because she doesn’t know what anything looks like so you just give her something to feel and she can spend ages mapping it out with her fingers and getting to know what it is.
“Regardless of her having to have surgery every few months and having to constantly go to the hospital and be prodded at, and her sister throwing footballs at her and all the appointments that she has had… she’s just very, very happy, and very content.”
The family celebrated Margot’s first birthday in October, which was “lovely”, Ms Duffy-Moss recalled.
To find out more about the life-enriching services provided to children and young people by Guide Dogs, go here