Cruel strangers stare and whisper because of my daughter’s rare condition – she’s always smiling but it makes me cry
WHEN mum-of-four, Vikki McAllister, looks at her daughter, April, she sees beauty and bravery.
Living with a rare facial difference, April is often subjected to cruel taunts and stares from strangers while she’s out.
But the smiley nine-year-old doesn’t let this get her down or stop her from living her life to the full.
Now, her mum is speaking out to raise awareness of Fibrous Dysplasia – a condition where abnormal fibrous tissue replaces healthy bone in areas of the body.
Vikki, 38, from Newcastle-upon-Tyne, says: “Over the years, I’ve found it really hard to cope with the stares and comments that me and April receive.
“But April takes it in her stride, and she is as confident as ever.
“By sharing her story, I hope that people will educate themselves and their children on how to treat people who have facial differences with kindness.”
In 2016, when April was one, Vikki noticed that April had one blue and one brown eye.
Concerned, Vikki took her to the doctors, who referred her to the genetic team at the Royal Victoria Infirmary in Newcastle.
At first, they diagnosed April with Waardenburg Syndrome, a group of genetic conditions involving the colour of hair, eyes and skin.
ULTRA-RARE
But after undergoing a CT and MRI scan to examine the bones in her head, April was diagnosed with Fibrous Dysplasia – an ultra-rare condition where abnormal fibrous tissue replaces healthy bone.
Vikki, a support worker, explains: “I was so confused, I couldn’t understand what the doctors were telling me.
“I’d never heard of the condition, so I went home and researched it, but there was hardly any information online.
“I was really worried.”
For two years, April didn’t display any visual symptoms so, Vikki thought that she might be fine after all.
I BURST OUT CRYING
But aged three, a growth started to develop on the left side of April’s face – causing her features to misshapen and her nose to grow to one side.
Vikki says: “The change was very gradual, so I didn’t notice a huge difference at first.
“But one morning, I was pushing April to nursery in her pram when a group of adults started staring at us.
“I didn’t know what to do. When I got to work, I burst out crying.
“I took to Facebook for support to find other parents with children living with a similar condition, but there was nothing.
“I felt really lonely.”
Over the following years, the growth continued to increase in size and April eventually had no teeth on the left side of her mouth.
Thankfully, April continued living life as normal, enjoying swimming and dance, and was so confident.
Vikki remembers: “She was so bubbly and loved school.
“She never asked about her condition, but on some occasions, would come home from school and tell me that another child had been talking about how she looked different.
“I told her that if anyone says anything nasty, they’re not her friends.”
What is Fibrous Dysplasia?
Fibrous dysplasia is a congenital condition that affects bone growth and development. Instead of maturing into solid bone, affected bones stay at the immature fibrous stage so are weak and misshapen.
Any bones can be affected by fibrous dysplasia – if only one bone is affected this is referred to as monostotic but if more than one is affected it is referred to as polyostotic.
Fibrous dysplasia is a genetic condition, caused by a mutation on a specific gene.
This mutation develops sporadically very early in pregnancy so is not inherited from parents or passed on through the family. The gene affected has been identified as the GNAS gene which affects how certain cells in the body – including bone cells – grow, divide and die.
The first sign of fibrous dysplasia is often a swelling in the jaw and gaps developing between the teeth.
This may be uncomfortable and cause problems with eating. If the bones in the skull are affected, this can make them misshapen affecting the overlying tissue.
Rarely, the abnormal bone growth can affect hearing if the ear canal narrows or vision if the optic nerve is compressed.
Source: NHS Great Ormond Street
PAINFUL SURGERY
Last year, doctors confirmed that April had 70% hearing loss in her left ear.
After a CT scan, they explained that if April didn’t have an operation to remove her growth, she’d go blind in her left eye.
In December, April endured a nine-hour surgery at the Royal Victoria Infirmary, where surgeons removed bone from her face and replaced it with muscle from her stomach.
Vikki says: “After the surgery, April was in ICU for a week.
“She was left with a large scar on her face, so wouldn’t allow anyone to visit and kept a blanket over her head.
“For a while, she lost all confidence. It was really hard to watch.”
Eventually, April bounced back and in March this year, Vikki took her to a farm where two boys pointed her out and made fun of her face.
STILL SMILING
Vikki says: “Luckily, April was oblivious to the comments and didn’t seem upset.
“But when we’re often out shopping, I see adults stare and then whisper to each other.
“Sometimes, I’ll be at the park when other parents think April has learning difficulties and I’m her carer.
“It makes me feel so angry. Little do they know that she’s the top of her class at school.”
Now, despite her operation, April is sadly blind in her left eye.
But she hasn’t let her condition steal her bright smile.
Vikki says: “I’m learning to deal with my emotions, and I’ve accessed support through Changing Faces charity on how to help April now that she’s growing up and becoming more self-aware.
“She’s beautiful, and I want others living with a condition like Fibrous Dysplasia to know that they are too.”