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A woman who is mother to a terminally ill baby has been left heartbroken by a nurse’s insensitive comment.
Phoebe Elliot has revealed that she has been subjected to thoughtless comments from strangers about her daughter Maisie, who has sadly been diagnosed with Galloway-Mowat syndrome 6.
The extremely rare genetic disorder impacts her five-month-old daughter’s ability to see, eat and move, with doctors warning that she’ll tragically be unlikely to survive into late childhood.
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Maisie is also thought to be one of just six people in the world to have the life-limiting condition, which she was diagnosed with at two months old.
Her baby also has primordial dwarfism and has to be fed via a feeding tube and pump.
The 26-year-old, who is also mum to three-year-old Harry, has now revealed that a nurse who looked after her child following the prognosis told her, 'you can always have another one'.
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The mum-of-two also explained how other onlookers have approached her on the street and have asked: ‘What’s wrong with your baby?’
Phoebe, who lives in Droitwich, Worcestershire, said: "Galloway-Mowat syndrome is terminal and it will affect her livers and kidneys, she won't be verbal or mobile.
"People will come up to me and say 'what's wrong with her?' or 'she's very small isn't she?' or 'she'll get better, chin up',” she said.
The impact these heartless comments have on Phoebe is extremely ‘challenging’, she explained.
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"When things are progressing and getting worse and you know that she won't get better it's very challenging.
"One nurse even said 'you can always have another' which is so insensitive.
"We actually couldn't even have another child if we wanted to and we had to go through fertility [treatment] to have Maisie and I had an emergency cesarean.”
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Phoebe was even ‘advised not to have more children’ by medical experts, and was left ‘shocked’ by the nurse’s comment.
She said: “I just thought it was so insensitive, to be honest. I wouldn’t expect that from anyone, you can’t just exactly replace your child.
"In the hospital, the nurses were also making constant little digs about my weight and said maybe that was why Maisie was so small.
"I wasn’t there to be lectured about my size. I think it’s terrible. I was told by one nurse she was that tiny because I was so obese, I'm not skinny but I’m only a size 12.”
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Phoebe is now hoping to raise awareness of her daughter’s condition, as well as fundraise for special days out together in order to create lasting memories for Maisie’s family.
“I just really want to make people aware of Maisie's condition to stop more hurtful comments,” she explained.
"People see our disability badge and try and peer into the car to take a look. I know a stranger doesn't know the full story but I just want people to think and be a little more considerate."
Phoebe, who lives with her husband James, 28, and their son said: "It was a shock when she was diagnosed and obviously we had a few down days knowing that her life was very limited.
"But we are just trying to keep positive and be led by her, we want to stay strong for her. We want to treasure every day.
"Part of her syndrome is uncontrollable crying. The only thing that keeps her happy is a little disco ball. It's only light that makes her happy, so it’s really hard,” Phoebe admitted.
"We have a GoFundMe for some sensory lights and for her and her little brother to make some special memories together.”
You can donate to Maisie’s GoFundMe here.
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Gabriella Ferlita