By Kim Reader
A mum who will never hear her daughter’s first words has described how the immobile tot has transformed their family’s outlook on life – as she expresses so much with just her eyes.
Caroline McNicoll tried not to worry about her daughter Florence McNicoll’s delayed development but when the tot had failed to meet any of her milestones by seven months old, the mum was filled with panic.
After a year of countless tests and scans, parents-of-three Caroline, 33, and Al McNicoll, 34, received the devastating news that their little girl had a rare and incurable neurological disorder.
While knowing that her daughter will never run or dance often leaves heartbroken Caroline feeling like she is ‘grieving’ it is Flo’s ability to say a thousand words with her eyes that keeps the mum going.
Flo has such an expressive face and mischievous sense of humour that she is ‘adored’ by her brother Élysée McNicoll, eight, sister Poppy McNicoll, six, and everyone she meets.
And the tot’s determination despite her disabilities has made her family realise that you don’t need to be productive to be a useful part of society as Flo brings joy wherever she goes.
Full-time mum Caroline, of Oxford, said: “Flo’s condition means she cannot move herself about at all. If you put her down somewhere, she will stay exactly where you left her.
“She also has limited fine motor so she can’t pick things up but if you give her a spoon of cereal she might manage to get it into her mouth. Some days are more of a struggle than others.
“She is really bright and she has a totally normal level of understanding but she can’t speak. She does try but she is amazing at communicating with her eyes.
“She’s got a book she can look through to tell you what she wants and she is so expressive. She’ll give you these looks that just speak a thousand words and she’s got a great sense of humour.
“Flo’s brother and sister absolutely adore her. She has completely transformed and enriched our lives. She has made us completely reassess our priorities and think differently about things.
“In society we put so much value on how independent and useful people are but I think the world has got their priorities a bit upside down.
“Flo is completely vulnerable and completely reliant but that doesn’t make her any less valuable.
“She is such a character. Everyone who meets her, without exception, absolutely falls in love with her.
“She might not be be able to walk up to people and just chat away but she manages to say so much without any words at all. Flo can win people over with just a look. She is a fab little girl and we are so proud of her.
“Having a child with such severe physical disabilities isn’t something you ever imagine happening to you and it has been really difficult, some days still are.
“Some days I feel like I get stuck in this place where I’m grieving the loss of all the things Flo will never get to do.
“Knowing she will never run or dance or any of those things we all take for granted is tough. But you can’t let yourself focus on those things, instead I focus on all the opportunities she will have.
“People ask when you’re pregnant ‘Is it a boy? Is it a girl?’ and you say ‘It doesn’t matter as long as their healthy’ but Flo isn’t an ordinary little girl and we couldn’t love her any more than we do.”
Despite having a completely normal pregnancy, church volunteer Caroline and assistant pastor Al started to panic when by Christmas 2015 Flo had not managed to sit up, crawl or babble.
After a visit to their GP the family began an ’emotionally exhausting’ journey of physiotherapy, blood tests, MRIs and neurological scans before Flo was diagnosed with a static dysmyelinating disorder.
The rare condition, which presents itself in a similar to cerebral palsy, means the substance that transmits messages from the brain to the nervous system is too undeveloped to do its job.
Although they were relieved to finally have a diagnosis, Caroline said she and Al would not have made it through without the incredible support of their family, friends, church and charities like Designability and Home Start.
While Flo may never walk, she received an electronic buggy called a Wizzybug from Designability in September 2016 which has given the tot a new sense of independence.
Being able to see Flo whizzing around in her buggy with other tots has been amazing for the mum and dad, who raised almost £3,000 for Designability by running the Oxford half marathon.
Caroline said: “At first when we realised Flo wasn’t doing things like sitting up or crawling we tried to tell ourselves that she was just going to do them in her own time.
“But by the time we got to Christmas, Flo was seven months old and she was struggling with everything. I looked at a list of the milestones she should have met and she hadn’t met any.
“I panicked but I never expected it would be anything like this. The next 12 months was just emotionally exhausting, we were constantly in and out of hospital for different tests.
“Flo just took it all as it came, it’s amazing. I don’t know anyone who likes being poked and prodded with needles but she has never let any of it phase her.
“The first six months were the most challenging because that’s when they were testing for and thankfully ruling out all the really horrendous things.
“I don’t know what we would have done without all the amazing support from our friends and family and the church. We have always had strong faith and we knew our prayers would help.
“We never told anyone when the doctors were testing for really awful things because we needed them to maintain hope while we were struggling.
“When we finally got a diagnosis we were just relieved that we had an answer and we could start getting on with our lives. We are so fortunate that it is not progressive or life-threatening.
“This might not be what we expected for our little girl but you just take life as it comes.
“We have three amazing children and we wouldn’t love Flo any more or any less if she was more able.
“Everyday we get to see her make progress. I watch her going around in her Wizzybug and she is getting so much better at using it.
“She can chase around her friends in the playground and she can move about when she wants to. She also thinks it is hilarious to ram into things. It is incredible. We are so proud.”
To donate to Caroline’s JustGiving page, click here: https://www.justgiving.com/fundraising/carolinemcnicoll