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My precious gem

Little Lillie is literally turning into a jewel


Published by: Chelsea Heatley & Amy Thompson
Published on: 14th January 2010

Sapphire blue eyes sparkled up at me as I stroked my newborn baby girl's tuft of platinum blonde hair.
She was perfect - worth every minute of my 22-hour labour.
'She looks so delicate,' I murmured to my partner Simon, 29, as she curled a tiny, petal-soft hand around my little finger. 'The name Lillie suits her.'
'I like it,' he smiled, wrapping
an arm around me.
It was the perfect start to our little family.
But we soon discovered just
how deceptive Lillie's fragile
looks were.
Back home, she screamed the house down!
I tried everything - giving her a bottle, constantly checking her nappy, taking her temperature?
'What am I doing wrong?' I frowned, rocking her in my arms while she wailed for England.
'It's normal,' the health visitor soothed. 'Some babies cry more than others. You're doing great.'
It helped to hear that, but I couldn't shake the feeling Lillie wasn't just making noise for attention.
Something was wrong with her.
By the time she was
three months old, I'd taken her
to the doctors God knows how many times.
Every time, I was given the same answer - there was nothing wrong with her. I was just another paranoid mum.
After six months of sleepless nights, me and Simon drifted apart.
Although he moved out, he was still a great dad to Lillie.
But she wasn't developing as we'd hoped. Aged six months, she only weighed 12lb.
Try as I might, I couldn't get her to eat solid foods, but she was constantly thirsty.
And she cried like she was
in pain - for hours, and hours,
and hours?
'All her blood tests came back normal,' her doctor told me, when I demanded answers. 'There's nothing physically wrong with her.'
They even tried to refer us to a child psychologist, suggesting that our break-up had affected her!
Surely, they weren't serious?
She was a baby for goodness' sake - not a teenager throwing
a tantrum.
Besides, there was no bad feeling between me and Simon, we pulled together for our girl.
Feeling hopeless, I watched over Lillie like a hawk.
Walking her through the park in her pram, my heart sank as I watched other mums pushing their little 'uns on the swings, hearing them giggle with delight.
Lillie was almost two now, and rarely smiled. She was still tiny, and her skin didn't have the usual pink flush.
For some reason, she always preferred to stay inside when it was sunny.
When she started being sick every day, though, I decided enough was enough.
No matter what the doctor told me, it didn't take a genius to see my girl wasn't right.
Taking her to St James University Hospital, Leeds, I demanded a second opinion.
When we got there, the doctors were wonderful.
For once, I didn't feel like an over-anxious mum.
They ran blood tests and hooked her up to check her heart, and did an ultrasound of her kidneys.
Finally, someone was taking my concerns seriously.
But when the doctor called me in for the results, my stomach lurched. Was I about to get the answers I'd longed for? And what if it was really bad news?
'I'm afraid Lillie has problems with her kidneys,' he said, sadly. 'It means they aren't functioning properly. Instead of storing all the nutrients from what she eats and drinks, and getting rid of the bad stuff, they're doing the opposite.'
I stared at him, baffled.
'There's more,' he continued. 'We think she has cystinosis, which will cause crystals to form in Lillie's organs.'
As he went on to explain some of the symptoms - sensitivity to sunlight, excessive thirst and pale skin and hair - everything clicked into place.
All this time, my little girl had been turning to crystal - from the inside out!
No wonder she'd been crying out in pain. 'So, what do we do?' I asked, looking at Simon.
Now we knew what was wrong, we could help her. 'I'm afraid there's no cure,' the doctor said, gently.
'We can give Lillie medication to stop it getting worse, but she'll need a kidney transplant when she's bigger.
That will sort out
her kidneys, but she'll still need medication for
cystinosis for life.'
I felt like my heart was being crushed in a vice.
Researching Lillie's condition on the internet back home, I searched frantically for a cure.
Instead, I discovered most sufferers never reached adulthood.
Me and Simon were devastated.
Three weeks later, she was fitted with a stomach tube, called a
PEG, to be used for giving Lillie her medication.
The liquid potion stopped her other organs from crystalising, but it was too late to get rid
of the crystals that
had already formed inside her.
I was stunned at the transformation, though.
For the first time, my little gem was actually smiling and laughing.
As the years passed, Lillie went from strength to strength. She loved anything pink and watching Dora the Explorer on telly.
Although she was still the size of a one-year-old when she turned four, she definitely had a huge personality.
If I caught her on tiptoes, trying to get to something out of reach, and went to help her?
'I can do it, Mummy,' she grinned as she grabbed a chair to stand on, so she could get up to
the kitchen cupboards.
I was shocked by how independent she was.
She can even inject her own medication into her stomach tube.
'I'll do it, Mum,' she said, tugging on her pink socks as I got her dressed.
Now she knows how to smile, she loves making others laugh.
Whenever Simon pops round to take her out, she'll pull silly faces until he's giggling like a kid.
The funniest thing was hearing her call me darling, though.
It was obviously something she's picked up from me.
'I love you, darling,' she tells me every day. It always makes me chuckle. But what really makes me smile is finally hearing her high-pitched, tinkling laughter.
Lillie's five, and thriving, although she may need a kidney transplant
in the future.
When she started school two years ago, I'd worried that other kids would pick on her because of her size. But when I collected her after her first day, I was amazed at how many friends she'd already made. Everybody seemed to know her name and wanted to wave goodbye to her.
I still have days when I get down about her condition, but I push the thought of never seeing her grow up and have kids of her own to the back of my mind.
I hope by then someone might have found a cure.
All that matters now, though, is that my little girl's happy and enjoying life at last.
She doesn't let anything stand
in her way.
That's why, no matter what happens, she'll always be my little treasure.
Laura Milner, 29, Castleford, West Yorkshire