Her sister’s keeper
Her twin daughters looked so alike, but mother’s instinct told Brenda Reeves, 45, that all was not as it should be...
In March 2002, I received the worst phone call of my life
Perched in her high chair, my 10-monthold Hannah suddenly came out with it. ‘Mama,’ she babbled. Her first word! ‘Clever girl,’ I gushed, giving her a kiss.
Then I pecked her twin Lexie on the top of the head.
‘I wonder if she’ll have the same first word?’ I said to my hubby Richard, 28.
But as the words left my mouth, I felt a stab of doubt.
See, the girls weren’t identical, but they looked so alike that sometimes I did a double take.
Same tufty blonde hair, same blue eyes.
I couldn’t resist dressing them in the same pink outfits, right down to their frilly little socks.
But looks were where the similarity ended.
While Hannah was babbling away, finding her first words, Lexie hardly made a peep. Apart from at night. As Hannah slept soundly, I’d pace the house with Lexie while she was wide awake.
All babies are different, I told myself. And Lexie was such a happy looking child, always had a big smile on her face. So surely nothing could be wrong. I pushed the worries to the back of my mind – but as time went on, the differences between my girls became more obvious. And when they were 8 months old, that’s when I voiced my worries for the first time to Richard.
‘I’ve noticed Lexie isn’t developing at the same rate as Hannah…’
I said one night over dinner.
‘Me too,’ he admitted.
So we took Lexie to see a paediatrician here in New York state, USA, for an assessment.
She’ll probably tell us we’re making a fuss over nothing, I thought as we arrived.
But after our girl was examined...
‘Lexie appears to have low-muscle tone around her mouth and poor motor skills,’ the doctor explained. ‘I think it’s best we refer her to a neurologist to carry out more tests.’
Over the next year, Lexie saw neurologists and consultants.
Then, in March 2002, I received the worst phone call of my life.
‘I’m afraid Lexie has Angelman syndrome,’ the neurologist said.
‘What’s that?’ I said, feeling my chest tighten.
‘It’s a rare genetic disorder that mainly affects the nervous system,’ he explained. ‘It doesn’t affect life expectancy but causes severe physical and intellectual disability.’
He told me the symptoms included having a small head, speech problems, seizures and sleep problems. He was describing our Lexie perfectly.
I had to come to terms with the fact that she would never speak, would require constant care and attention. Then, the doctor mentioned another symptom that made my heart break.
‘Children with Angelman always appear to be smiling,’ he said. ‘They tend to have happy, excitable natures.’
I’d always adored Lexie’s happy smile.
‘I’d no idea it was a sign she was poorly,’ I wept.
Hanging up, I looked at my girls. Still with matching outfits and blonde curls. But now facing different futures.
Would Lexie live a good life? How will Hannah cope? Would this come between them?
Heartbroken, when Richard came home from work later that day, I told him everything.
‘We’ll take each day as it comes,’ he said, pulling me in for a hug. It was all we could do.
As the girls grew up, Lexie’s disability took a toll on our family as she was on a lot of medication and needed round-the-clock care.
Things were difficult but we
tried to stay positive.
Lexie always appeared with a smile – but on the flipside, she suffered from epileptic fits, couldn’t speak and would have the mental age of a 4-year-old, even when she would become an adult.
It was tough watching Hannah reach milestones, like learning to ride a bike, when Lexie didn’t – but we tried our best to include Lexie as much as we could.
I was wrong about one thing. Lexie’s condition never came between my girls.
They still remained totally inseparable.
A magical bond…
The girls gradually grew up, – and while Hannah knew her sister was different, she didn’t think anything of it. Lexie’s not speaking wasn’t a big deal to Hannah.
They seemed to understand each other. Whenever Hannah played dressing up, she would always make sure Lexie was the centre of her attention, pulling on dresses and looping colourful beads around her neck.
‘You’re beautiful, Lexie,’ Hannah said, planting a kiss on her forehead.
And Lexie, as cheeky and mischievous as ever, would pull Hannah in for a hug and playfully fight with her.
‘Lexie is the best sister in the world,’ Hannah would often say, hugging her tightly.
Hannah started playing football at school – and any time she played a tough match, she’d say that Lexie was her motivation to keep going.
‘Lexie has to be there. She’s my biggest supporter!’
But as I watched Hannah reach her goals, enjoy school and make friends, a part of me felt guilty that Lexie would never get to experience a life like Hannah’s.
To combat that, we put in as much effort as possible so that Lexie had a relatively normal life.
Every year we’d send her to an active summer camp where she could meet other children with similar conditions, play sport and have fun.
Earlier this year, in June, Hannah left school and made a speech, hailing her sister as her biggest inspiration.
And Lexie doesn’t need language for me to know she feels the same.
Sadly, me and Richard divorced in 2015 but we continue to support our girls as much as we can together. They’re 18 now. Hannah plans to study Occupational Therapy at university, so that she can help people with disabilities like her sister.
As for Lexie, we’re still doing what we said all those years ago, taking each day as it comes.
The future’s still uncertain, but now something tells me that as long as my girls have each other, everything will be fine. Hannah says, ‘Lexie is my biggest motivation in life. If it wasn’t for my sister and our close bond, I’m not sure what kind of person I’d be. She pushes me to try my best and I love her unconditionally.’
My sweet Lexie – we don’t need words...
Aged 4. Lexie was always smiling
The girls were little gigglers!
Hannah and Lexie: a magical bond