“From her very first Living Paintings book, she couldn’t stop smiling” – Mia’s story
28th September 2023
Becoming a parent is all about firsts. The first time your baby laughs, their first tentative steps and the first time they break into a huge smile upon seeing their mother’s face.
But Alice will never know that particular joy. That’s because Alice’s little girl Mia is blind.
Now three, Mia was born with Optic Nerve Hypoplasia (ONH) and Nystagmus – a very rare condition that results in vision loss in children. There is currently no cure.
Alice and her husband James first suspected something might be wrong when Mia was a baby.
“We took her to the doctor at four months as her eyes weren’t following or tracking as they should have been, but it was put down to delayed visual maturation,” explains Alice. “Her eyes were also shaky, and she had a large squint. My mum and I also had squints when we were younger, so we weren’t too concerned at first.”
It wasn’t until Mia was one that the severity of her condition was discovered.
“After her first birthday, she had an operation to correct the squint and while she was under anaesthetic, the doctors were able to have a good look behind her eye. They finally noticed that her optic nerve was small, which is a sign of ONH. But even then, it took months before she was officially registered as severely sight impaired,” says Alice.
“Our diagnosis journey was hard. It seemed that none of the medical professionals wanted to use the word ‘blind’. Nobody wants to hear that their baby girl won’t be able to see but it was important for us to prepare and for it not to be sugar-coated. With her going to nursery, I needed them to know her capabilities so they wouldn’t expect her to do more than she could.”
It wasn’t until the family had a Zoom appointment with the physio with the paediatrician that they were finally referred to the Vision Support Team
“The team at Great Ormand Street Hospital agreed that Mia is severely sight impaired and we finally got this registered officially and ONH was diagnosed,” says Alice. “Due to ONH, Mia’s nerves are underdeveloped. She is also regularly monitored for her growth hormones as some people with ONH also have pituitary problems. We’ve learned that she has light perception and can tell, for example, when a door is open but playing is always done through touch.”
Despite Mia’s challenges, Alice describes her as “a real bookworm”. The family initially worried that Mia would not be able to enjoy stories and books, but credit Living Paintings in helping her to fall in love with reading.
“Mia loved listening to stories from the very beginning, but the books from Living Paintings transformed her reading experience immediately,” says Alice. “From that first book – Fun with Spot by Eric Hill – she couldn’t stop smiling and giggling when she was feeling and touching the raised pictures.”
The family discovered Living Paintings and its free postal library of Touch to See books when Mia was two and have been receiving books regularly ever since.
“The second book was Superworm by Julia Donaldson and this became her favourite straight away,” says Alice.
“Before the book, she had no idea what a worm looked like and couldn’t really imagine it but as soon as she was able to trail her fingers across the body and visualise it, she understood, and the story made much more sense to her. The braille pages and raised tactile image of the worm unlocked a lot for her. She loved it so much that she wanted us to read it every day together with a glass of milk. It became our special little ritual.
“Mia also loved Hugless Dougless by David Melling, which is about a baking bear. This was the first time she understood what a jar of honey would look like and liked to hug the bear through the book. The books really spur on her imagination.”
Mia now excitedly awaits new deliveries of books by Living Paintings every couple of months.
“We always leave the box of books in the same place for her so she can tell where they are – she gets so excited when they arrive,” says Alice. “When she knows the box is there, she exclaims ‘that’s my Living Paintings box!’ and always tries to open it herself. We like to explore the new books together and then she goes off and reads them herself – she absolutely loves it.”
So much so that Alice has decided to surprise Mia with something special for her fourth birthday.
“What she really wants is a reading nook, so we’ve created one for her as a surprise for her birthday,” she says. “We’ve set it up in the hallway and have fairy lights, a beanbag, rainbow tassels and a rainbow rug along with a trolley with all her favourite books on it. We’ve had to keep the beanbag in the box, otherwise she’ll feel it and spoil the surprise!”
Since her shaky start in life, Mia has become a big sister to eight-month-old brother Freddie.
“It’s funny seeing Freddie learn new things as a baby because he’s so different from Mia,” says Alice. “As Mia was our first, we didn’t really notice that she wasn’t meeting milestones – such as walking – but now it’s clear to us. Mia didn’t walk until she was 18 months and only bum shuffled before then, but Freddie has been confidently crawling for a while.
“Mia loves being a big sister but gets annoyed when Freddie takes her beloved books. He’s obsessed with her Living Paintings books – it must be the bright colours – but Mia always tells him to get his baby books instead.”
It’s due to her connection with Living Paintings and her great love of reading that Mia will be able to attend mainstream school when she’s old enough.
“She does a mix of special needs and mainstream nursery but she’s very bright and we know she’ll rise to the challenge of mainstream school,” says Alice. “We introduced braille from a young age, and I’ve started to teach her but it’s early days. I’d like to learn with her so I can help but it’s a bit nerve wracking. Having braille books of her favourite stories will help her on that journey.”
Mia is a very special little girl. For an almost four-year-old to be such a bookworm when registered blind is a miracle and even though Mia has never smiled at seeing her mother’s face, Alice takes great pride in her other accomplishments.
“Although Mia doesn’t smile when she sees me, as Freddie now does, she’s reacted in different ways,” she says. “We like to sing a lot and she’s recognised my voice for as long as I can remember. She was also vocal quite early and her speech has always been amazing, she’s been very in-tune to listening.
“This journey was very tough at the beginning, but I’ve learned a lot. I feel it’s so important to share her story and spread awareness so that more people understand that blindness is a spectrum and doesn’t just mean pitch black for blind people. Only time will tell how much Mia will be able to see as she gets older, but we’re so proud of how much she’s taken to books and a huge credit goes to the fantastic service from Living Paintings for helping her to unlock new stories and her own imagination.”