Ruby is our hero
For Laura Sparrow, life as a mum may be challenging, but it has brought so many special and surprising moments, too
Feisty and independent aren’t usually the words that people would think apply to a severely disabled child, but ever since my daughter, Ruby, was diagnosed with the neurological degenerative disorder Rett syndrome, she’s been proving people wrong and surprising them – even me.
Whether she’s using her special computerised eye-gaze machine to spell out ‘you smell’ to her daddy, John, 40, with a wicked glint in her eye, or arching her eyebrow suspiciously when I attempt to read her a book she doesn’t like – with every eye-roll and shake of her legs to say ‘No way!’, Ruby, now nine, has charmed everyone she meets and kept us all on our toes, without being able to say a word.
Of course, when it dawned on John and me that Ruby might be a little different to other babies, we were scared and full of apprehension. Watching her sitting in the middle of the garden grappling with toy bricks on her first birthday, while her little friends crawled and climbed over her, I was immediately struck with how advanced they were compared with her.
Her own little world
All those reassurances from family and friends that ‘she’d catch up’ or ‘every baby is different’ just paled into insignificance when I looked at my little girl, barely sitting up, not engaging with anyone, and seemingly locked inside her own little world.
From that day on, John and I vowed to find out what was wrong with Ruby, only, despite endless doctors’ appointments and tests in hospital, it wasn’t until the day before her second birthday, in August 2012, that a neurologist at Great Ormond Street Hospital finally got to the bottom of it. And it was devastating news.
‘I am so sorry,’ he said, genuine sadness in his eyes. ‘Ruby has Rett syndrome, and it is one of the worst disabilities that a child can have.’
John and I sat there in the family consultants’ room, speechless, as the neurologist painted a dismal and terrifying new reality for our little girl. The degenerative disease would eventually strip her of her ability to talk, walk and communicate, to the point where she’d only be going backwards in terms of her development.
While now, at almost two, she already struggled to crawl, and was only saying ‘mummy’ and ‘daddy’, soon this terrible disease would even rob her of that.
‘This can’t be happening,’ I wept to John on the train home, but there was nothing he could say to comfort me.
‘We just have to do what we can for her,’ he said.
The next morning, it was Ruby’s second birthday, and, as heartbroken as I was, I had to face my mum, sister, brother and our close friends to tell
‘THIS CAN’T BE HAPPENING’
them about Ruby’s terrible diagnosis, as well as make sure she had a good day.
It felt surreal, watching Ruby giggling and rocking from side to side on her toy pony as I explained that the condition meant it was unlikely that she’d walk, talk or lead an independent life.
As the weeks and months went on, Ruby’s practical needs took over from my own emotional pain, and I started to focus on what I could do to make her life the best it could be.
Head shaves
With our family’s support, we started organising curry nights, quizzes, sponsored head shaves – and were flooded with kind donations, which meant that we could buy Ruby the eye-gaze machine.
Thanks to this, which enables her to use eye movement to say certain words, and her regular physiotherapy appointments, Ruby was able to flourish mentally – but physically, by her third birthday, John and I, with the help of a team of carers, still had to do everything for her.
But, as she got older, Ruby made even the difficult and mundane things
funny. One morning, I was lifting her out of her wheelchair and about to hoist her down into the bath when the strap got stuck in the wheel. Her face crumpled with amusement, and she laughed so hard that tears were streaming down her cheeks.
‘You love it when things go wrong, don’t you?’ I chuckled as she eventually settled into the bath and splashed around happily.
She started going to a school for children with special needs, and she was a terrible flirt – using her eye-gaze machine to tell all the boys in her class that they looked nice.
‘Sometimes, I wish I could turn that thing down!’ I laughed to her teacher.
Although Ruby had to be tube fed and was mostly in the wheelchair, it was incredible how much of a normal life she was able to lead, with music school and swimming lessons at the weekends and visits from friends.
Of course, I’m not pretending that being a parent to a severely disabled child like Ruby isn’t incredibly difficult – it can be exhausting and also very isolating – which is why we got involved with the charity Wellchild and its Family Tree
Network, which allows parents with disabled children to connect online and in person to give each other much-needed help and support.
Funny and loving
Now, Ruby is able to stand with some help, but her spine is very curved, and she has a number of operations ahead of her. But she’s a happy, loving and funny little girl who I hope has a long future to look forward to.
Ruby is so much more than her disability, and I want the world to see her – not her condition. Whether she’s watching Frozen for the millionth time, enjoying her favourite pop songs in the car, or settling down with her daddy to play Monopoly and telling him that he’s going to jail, with a wicked little chuckle, in so many ways Ruby is just like any other little girl approaching 10 years old.
And we are all so proud of her
– she’s our hero.
Wellchild is the national charity for seriously ill children and their families. The Wellchild Family Tree Network has a wealth of information and support for families like Ruby’s. For more information and to make a donation, visit wellchild.org.uk/donate.