By Rochelle Hughes
A mum whose ‘heart breaks’ when children laugh at her son’s deformities every time they leave the house is desperate to give him his own bedroom – but claims her family have been let down by the system.
Four-year-old Loui Legend Heath Herriott suffers from Treacher-Collins syndrome, a condition characterised by facial and cranial deformities.
Mum Karly Herriott, 31, gave birth to Loui in February 2015 after a textbook pregnancy and had no idea what was wrong with her son for 24 hours after she heard a nurse say ‘his face is a bit funny’ before he was whisked away to be stabilised.
The mum-of-one and Loui’s dad Luke Heath, 32, are determined to challenge misconceptions around Treacher-Collins as Loui receives stares and hurtful words every single time they leave the house.
The pair, who currently share a one-bedroom flat with their son and all his medical equipment, are also fighting the authorities to ensure Loui gets a bedroom.
Veterinary nurse Karly, from Lancing, East Sussex, said: “I’d had such a normal pregnancy.
“When Loui was born I fixated on hearing his voice and then it stopped.
“He stopped breathing and a nurse ran in and said, ‘there is something wrong with his face, his face is a bit funny’.
“She was in shock and before I could even say anything, they ran off with him.
“When I eventually saw him, he didn’t look the same as other babies.
“Everyone stares every single day.
“Children come running into the next aisle at the supermarket just to have a look, even adults who should know better always try and get a second glance.
“Most percentage of children say things like ‘mum look at that boy, he’s so ugly so weird.’
“Ever since he was born I have took him out to ensure he never feels bad about going outside.
“He deserves the same opportunities as other children.”
Karly and carpenter Luke were introduced to Loui 24 hours after he was born when he had been stabilised and fitted a breathing device.
The youngster’s condition means he was born with a small chin which means he needs a tracheostomy in order to breathe.
He has almost absent outer ears and compromised no middle ear so he has to wear two bone anchored hearing aids in order to pick up sounds.
Loui also has downward slanting eyes as the bones of the eye sockets are so under-developed and he has very small cheekbones.
But his parents decided early in Loui’s life to give him a name for him that he would live up to – giving him the middle name ‘Legend’.
Karly said: “It was apparent very early on that he was a little legend, the way he got on with everything he has had to deal with.
“As he got older his amazing personality has just shone through.
“Loui’s brain not affected by Treacher-Collins syndrome, we have been told in a lot of areas he is of above average intelligence.
“He’s become a little comedian and that really is a silver lining.
“He is so clever and witty and we are so proud of him.”
Karly said caring for Loui is a full-time job as he requires 24-hour care due to his tracheostomy, which is an artificial opening into the windpipe to help Loui breathe.
Despite both working, Loui’s parents are stuck in a tiny one bedroom flat they purchased before Loui was born, 13 miles away from family and friends who could help ease the pressure of caring full-time for Loui.
The one-bedroom flat means that Loui has to sleep in the living room surrounded by his medical equipment, even though he would love to have his own room.
The couple have asked several organisations for advice and support to help to move to a two bedroomed house in Brighton but claim they have been told that because they own the flat there is nothing that can be done.
The family claim they have been told that they are only able to get on to a housing list if they are homeless and allege their local council suggested when Loui was a baby, they sell their home to speed up the process.
The couple and their families have also had the expensive task of learning sign language, which is not government funded, in order to communicate with Loui, who is now at pre-school and will be heading off to a mainstream nursery with a deaf department in September.
Karly said: “I feel as though we are being backed into a corner and we have nowhere to go for help.
“I’m not going to make myself homeless and feel as though we are being penalised for working.
“Any spare money we have goes towards Loui’s care and it’s made it impossible to save for a new house or flat.
“We do get some benefits but these are eaten up by everything extra Loui brings like keeping medical equipment charged, the heating being on all night long for the carers and Loui, an extra water bill for hundreds of syringes and feeding paraphernalia and special foods.
“The trips to London Great Ormond Street Hospital plus trips to appointments and surgery are also expensive.
“The flat is full to the brim of Loui’s medical equipment.
“The situation is all consuming, every second of every day I worry about him.
“It would actually be easier if I claimed to be a single mother but obviously we aren’t going to do this.
“There’s no help for a struggling young couple to remain together and care for their disabled child at all. It seems so unfair.
“I just feel helpless, I feel like I’m letting Loui down. He’s such a happy boy and we just make do.
“He’s never complained but his face lights up when we talk about the possibility of him having his own bedroom.”
Friends of Loui’s parents have started fundraising to help get Loui a bedroom and for surgery which cannot be performed in the UK.
To donate please visit: https://www.gofundme.com/loui-legend-needs-his-own-bedroom