A SCOTS mum has appealed for help after a rare condition left her two year old daughter unable to smile.
Doctors have been unable to diagnose Kianna Rutherford’s condition and have told her mother, Ciya, she may be the only person in the world with the condition.
The 20-year-old from Kirkcaldy, Fife, described her daughter as a “wee miracle” after fighting back from a series of horrendous problems at birth.
But she added: “What I find the hardest is that she can’t smile.”
Kianna was given a week to live when she was born and two years on, she is unable to swallow, has to be fed through a tube and uses a frame to help her walk.
Ciya said: “When I had a scan done six weeks before she was born nothing came up which showed there was anything wrong.
“But Kianna arrived six weeks early so sometime between the last scan and her being delivered, something must have happened.
“When she was born she couldn’t breathe properly and had a big lump on her head which looked like she had a second forehead. She couldn’t move at all and she was completely rigid for six months.
“The doctors told me she would always be paralysed and would never be able to do anything. It was horrible.
“She couldn’t move her eyes and she can’t close her mouth – but what I find the hardest is that she can’t smile.
The nerves on either side of Kianna’s mouth are damaged.
“I still find it heartbreaking when strangers come up to us and ask why Kianna isn’t giving big smiles. That hurts the most. I want to tell them why but I don’t want to make them feel bad for saying it.”
The girl has made good progress since the initial diagnosis gave her just one week to live.
Ciya said: “At six-and-a-half months she opened her hands and is now able to crawl commando style. She has a zimmer to help her walk and is also starting to learn sign language.
“She was on eight different medications a day but that is down to two or three.
“She also had to be given oxygen regurlarly, but now only needs it if she is really ill. Is it getting easier as she gets older.”
Kianna is fed through a small tube to her stomach twice a day for four hours each time and also suffers from Bowel problems.
Ciya takes her daughter to Edinburgh for regular tests but so far docs have been unable to diagnose the little girl.
Ciya explained: “Kianna is still going for tests but the doctors don’t know exactly what her condition is. I have been taking her back and forth to the Sick Kids Hospital in Edinburgh.
“At one point they thought it might be Moebius Syndrome – as being unable to smile is the main symptom of that condition – but is unable to move her eyes and doesn’t have a lot of other symptoms of that syndrome, so they don’t think it is that now. It is so rare that she may be the only one with this.”
Ciya is hoping to raise £1,200 to take her daughter to a specialist facility in Somerset. The centre helps babies to improve their mobility.
Ciya said: “Kianna can’t smile but she has a sort of twitch like she is trying to smile.
“But I know when she is happy because I can tell by her eyes and the noises she makes. She is my wee miracle.”
