It was February 2015 and heavily pregnant, I was counting down the days until my due date.
I’d enjoyed the most perfect pregnancy, with no issues at any of my routine scans, and loved nothing more than feeling my precious boy’s little kicks.
My partner, Luke, 32, and I had decided on the name Loui.
‘We can’t wait to meet you,’ I cooed as he moved around in my tum one night.
I tried to imagine what he’d look like and whether he’d have Luke’s lips or my nose.
But just moments after giving birth at 41 weeks, our world came crashing down.
‘There’s something wrong with his face, it’s a bit funny,’ the nurse said, before I could even see him.
She seemed to be in shock and ran off with him into another room.
‘Where is she taking our baby?’ I sobbed.
The next few hours passed in a blur.
‘We’re trying to stabilise him,’ doctors explained.
I was inconsolable.
We were forced to wait 24 hours before we were introduced to our son for the first time.
I knew as soon as I saw him there was something different about his face.
‘He doesn’t look like other babies,’ I cried to Luke.
Loui needed help breathing and had a tube down his throat. It was all
so overwhelming.
‘Your son has Treacher Collins syndrome, a genetic condition characterised
by facial and cranial deformities,’ the specialist explained.
Loui had many complex needs and I knew he’d need our full-time care.
Born with a small chin, he needed a tracheostomy in order to breathe.
And his ears weren’t fully developed. There was only a small amount of outer ear and no middle ear, so he needed a hearing aid, which had to be placed over his head in order to pick up sounds.
He also had downward slanting eyes, as the bones of the eye sockets were so under-developed, and very small cheekbones.
Despite everything, he was our baby. I stopped noticing his differences and fell in love.
Because he had a trachy fitted, Loui needed 24-hour care. After three months
he was discharged from hospital and we were so excited to take him home.
But he was subjected to so many cruel comments and stares every single day.
‘Do you think people will ever stop staring?’ I sobbed to Luke.
We didn’t know what the future held for Loui and his rare condition but we were determined to enjoy every day with him.
We decided to give him the middle name ‘Legend’ as it was apparent very early on that he was a little legend, the way he got on with everything.
As the condition didn’t affect his development, my clever boy hit all his milestones.
Aged two, he became a model for a local online brand, who even made up a T-shirt with ‘Legend’ on it.
Although he couldn’t speak, he loved to dance and make other people laugh by being silly.
He was still subjected to strangers’ taunts though.
‘Mum, look at that boy, he’s so ugly and weird,’ I heard a little boy giggle
one day.
It was bad enough when it was children, but when I spotted adults staring, I got really angry.
I had to ignore it though. I didn’t want Loui to feel bad about going outdoors.
And I vowed not to let their ignorance overshadow Loui’s amazing personality.
Now, he’s a normal four-year old. He’s at mainstream nursery and is very popular with the other kids.
As a family, we’ve learned sign language so we can communicate with Loui.
It’s amazing how far he has come since being born.
And despite the amount of hospital appointments, routine check-ups, and stares from strangers, he never complains.
We’ve even been told that in a lot of areas, he is of above-average intelligence.
We couldn’t be more proud of Loui. He’s our only child and although we worry about him every single day, when he looks up at us with his bright blue eyes and beaming smile, that’s all we see and it makes all the hard work seem worth it.
We’re currently trying to move out of our tiny flat so Loui can have his own bedroom.
Currently, he sleeps in the lounge surrounded by his medical equipment.
We’ve been forced to set up a fundraising page for this as we cannot afford to move ourselves.
We hope Loui’s story showcases what a little legend he truly is. ●
To help, go to gofundme.com/loui-legend-needs-his-own-bedroom
