Battling Ebbw Vale girl is one of eight who have condition
BORN with one of the world’s rarest health conditions, Alicia Lloyd is a brave little girl for whom the description one in a million does not even come close.
The ten-year-old, from Beaufort, Ebbw Vale, is among just 200 documented cases of Nager syndrome across the globe in more than 100 years.
In dealing with its consequences, Alicia has had nine operations on her face, mouth and feet, including one aged just three years, when her jaw was broken and a device fitted enabling it to grow.
She faces more of the same soon, and having been born with club feet, further surgery to straighten them.
Alicia was born with a very short jaw – causing breathing problems – no eye sockets, no cheekbones, a very short soft palette and a hole in the top of her mouth, none spotted at birth by doctors.
She was also born with the umbilical cord wrapped around her neck and required resuscitation.
Mum Lisa Bailey, meanwhile, almost lost her life during the birth as she lost so much blood.
Thus began a journey of discovery about her daughter’s condition, during which she often spotted abnormalities before doctors.
“That began before she was born. During an ultrasound scan we noticed and mentioned that her jaw seemed far back but were told it was the way she was lying,” said mum Miss Bailey.
“When she was born the problems with her mouth and soft palette weren’t spotted straightaway.
“All we knew before she was born is that she would have club feet, and need splints to help straighten them.”
After three and a half months Alicia came home.
As her problems were identified, genetically based syndromes such as Pierre Robin and Treacher Collins were diagnosed.
Alicia also contends with being deaf in her left ear.
Despite this her sunny disposition is an inspiration.
“She’s got a lot to deal with, but she’s quite determined and knows what she wants,”
said Miss Bailey.
“She has a lot of difficulty with her speech, but wants to be like everyone else.”
Syndrome such a rarity
THERE are currently just eight cases of Nager syndrome in the UK and 112 worldwide – and since 1905 only 200 documented cases across the globe.
“It’s similar to other syndromes, which is why Alicia had different diagnoses early on,” said Miss Bailey.
“Doctors in the UK know very little about it, most of the knowledge is in the USA.
“I’ve found other families and we’re in contact, which is great because it can be very difficult.
“She goes to mainstream school (All Saints RC Primary, Hilltop, Ebbw Vale) and loves it, but I worry about bullying when she goes to secondary school.
“Because Nager syndrome is so rare people look at her and I see them thinking ‘what’s wrong?’ “It’s hard to get support at home too. She doesn’t meet the criteria for a parking bay and I can’t get a wheelchair for her, which she needs if we’re out for a long time, because she struggles.
“I also wonder what will happen when she’s older.”