Real Life The words that I longed to

I LOVE YOU,

Liz Eade thought she would never hear those four precious little words from her girl

MUM

Most expectant mothers dream about their children’s futures –wondering whether they’ll be shy, smart or wonderfully chatty –and I was no diff erent when my daughter Sophie was born. But what do you do when doctors tell you your seemingly perfect baby has an incurable genetic disorder? How do you come to terms with knowing she’ll need lifelong care and you’ll never hear her call you ‘Mummy’, or say ‘I love you’? My husband, Mark, then 31, and I were overjoyed when I fell pregnant in April 2014, especially as I’d suff ered irregular periods as a teenager and doctors had warned I might struggle to conceive. In January 2015, aged 29, I gave birth to 6lb baby girl Sophie, and she seemed utterly perfect in every way, with her smattering of dark hair and her big, brown eyes. She’d giggle as I blew raspberries on her belly –and although she suff ered a bit with refl ux, causing her to projectile vomit her milk, I was told lots of babies did. But, by March 2015, at 10 weeks, Sophie was still struggling to hold her head up like other babies her age were doing. Instead, it lolled slightly to the right. At fi rst, doctors told us not to worry, assuring us that Sophie would get stronger –only she didn’t, and by six months old she couldn’t roll over and would just slump in her high chair.

Search for answers After tests, Sophie was diagnosed with torticollis –a painfully twisted and tilted neck. It was something she’d probably had since birth, but which had gone unnoticed. A physiotherapist did

Real Life

Sophie’s ability to communicate has been transformed exercises with Sophie to help straighten her neck, but she still couldn’t sit unaided –it was as if her chest muscles weren’t strong enough to hold her up. Sophie was referred to Stoke Mandeville Hospital, and watching my little girl undergo CT scans and MRIs was heartbreaking and exhausting, especially when they revealed nothing. ‘We just want to know what’s wrong,’ I sobbed to doctors. Then, one morning in December 2015, when Sophie was nine months old, I went into her nursery at our home in Aylesbury and opened the curtains. But, instead of babbling away as usual, Sophie was eerily silent. Peering into her cot, I saw that she was wide awake and beaming back at me. ‘Morning, baby girl,’ I grinned, pulling silly faces to try to make her giggle. Nothing. I tried funny voices, playing peekaboo. Yet, while Sophie’s mouth opened, still nothing came out. ‘She can’t make a sound,’ I realised. Disturbing silence As Mark and I raced Sophie to hospital in a panic, I felt sure that, whatever was wrong with our girl, her sudden, strange silence was part of it. Sophie was referred to John Radcliff e Hospital in Oxford, and we were more desperate for answers than ever as she underwent more blood tests and scans. But, despite endless appointments, we and her doctors remained clueless. Sophie’s frightening silence continued, and there were no more giggles or cute baby babble, and no fi rst words. By the time she’d turned one, Sophie was noticeably behind her peers, who were crawling and walking about, could say ‘Mum’ or ‘Dad’ and were learning the names of animals. Sophie couldn’t do any of it. Sadly, the stress of not knowing put a strain on our marriage and, in January 2016, Mark and I separated, remaining friends for Sophie’s sake. Another year of stunted development and silence followed. Then, in February 2017, just after Sophie’s second birthday, a specialist from Stoke Mandeville Hospital came to see me at home. Sitting in my kitchen, she explained that Sophie ‘IT MEANT EVERYTHING TO ME’ ‘I WAS TOLD SHE’D NEVER SPEAK’ had a rare disorder called Rett syndrome, caused by a genetic mutation. The condition usually aff ects girls, results in severe mental and physical disability and is incurable. ‘What does that mean for Sophie?’ I wept, before listening, heartbroken, as I was told Sophie would never speak and would gradually lose any skills she had picked up –the ability to eat, smile or even move. As the condition aff ects children diff erently, she couldn’t say how long Sophie would live. After the specialist left, I pulled my little girl close and sobbed, grieving for the child I’d lost, for all those dreams I’d had for her when she’d been growing inside me. She’d never take part in sports day or run after her friends in the playground. She’d never be fi rst to hold up her hand in class to answer a question, she'd never even get told off for answering back. And knowing I’d never hear her say ‘I love you’ was heartbreaking. Sophie started regressing rapidly. She’d never started crawling and she couldn’t even pull herself to standing. She needed a specialist buggy so we could push her around. Soon she coughed whenever she ate, so in June 2017, she had an operation to fi t a feeding tube straight into her tummy. Although she couldn’t speak, Mark and I were determined Sophie could still communicate with us, and we bought picture cards so she could point to things. ‘Would you like a toy? A teddy?’ I’d ask, and it was like a fun game –Sophie would stare at the cards as they fl ashed by, before pointing at whatever she wanted. ‘Cuddles,’ I’d say, sweeping her up and showering her with hugs and kisses. She also learnt little ways of letting us know whether she was cold or needed the toilet. Still, it was exhausting, and some days Sophie couldn’t point at the cards and would just have to stare at the pictures until I understood. I hated seeing her so frustrated. We knew it wouldn’t be long before we’d need thousands of picture cards to help Sophie express everything she wanted to say. That July, I heard about a state-of-theart machine called Tobii Dynavox. It uses a camera to track eye movements, then say aloud what the user is looking at. It could be life-changing for Sophie but, at £11,000, it was out of our reach, and we didn’t qualify for one of the few available on the NHS. Huge breakthrough Mark and I started fundraising, holding quiz nights at the local pub, while friends completed sponsored runs. By October 2018, we’d reached our target. A specialist taught Sophie and me how to use the machine and, amazingly, it took her just a few weeks to master it. From then on, our lives became easier as Sophie could ask for exactly what she wanted without any guesswork involved. She became more independent and confi dent –until, one day when we were sitting around not doing anything much, Sophie looked at me. ‘I love you, Mum,’ she said. It was a bittersweet moment, as it wasn’t her voice –I’ll never get to hear that –but just knowing it came from her heart meant everything to me. Tears welled as I told her I loved her, too. Now Sophie, fi ve, has been using the machine for over a year and can form full sentences. It’s given her a childhood, and she even takes it to school to chat to her friends like any child her age. We still don’t know what the future holds for Sophie, but we cherish every moment with her and every single word she has to say. In hospital

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