A mysterious condition has left an 11-year-old girl bed bound, mute, unable to read or write and back in nappies.
Kaci Smith began suffering slurred speech and just 72 hours later had deteriorated rapidly.
Her mother, Emily Smith, 30, said her daughter was a ‘happy and healthy girl’ until she was struck by the illness, which doctors have been unable to diagnose.
She said Kaci has lost ‘everything’ and has been left unable to communicate with anyone since February.
Emily, from Morganstown, Cardiff, said: ‘Kaci started slurring really badly and within three days she could not say a word. She has not spoken for months.
Kaci Smith is suffering an unidentified illness which began with slurred speech
Since February, the 11-year-old has been unable to talk, walk, read or write and is bed bound and in nappies
‘Since February she has lost everything. She can’t read, she can’t write, she can’t walk or go to the toilet. She is back in pads. She literally can’t do anything on her own.
‘She can’t use a knife or a fork. She doesn’t eat. She can’t play with anything. If you give her something she gets aggressive. It’s frightening for her and it’s frightening all of us.
‘It’s no quality of life for anyone. It’s absolutely heartbreaking.
‘Watching her melt away and missing life, I’m not sure how much more we can take. Everyone is devastated.
‘I have wished so many times that it happened to me instead of her.’
Waiting list
Mother-of-three Emily has had to quit her job to work as a full-time carer for Kaci who now relies on her for everything.
But frustratingly, doctors have so far been unable to pinpoint what has caused Kaci’s illness.
The family are now waiting for an appointment with a specialist at London’s Great Ormond Street Hospital but have been told the waiting list is at least six months long.
Her family say she was a ‘happy and healthy girl’ until she was struck by the bizarre illness
Emily says she is now living in ‘hell’ waiting for a diagnosis and fears Kaci’s condition could deteriorate further if she isn’t treated soon.
So far, the illness has left Kaci so distressed she refuses to go out and tries to harm herself.
Kaci now frequently shuts herself in her room and refuses to see her friends.
Emily said: ‘She doesn’t want any contact with her parents. We are all just nonexistent. She has completely given up and gone into herself.
‘We can’t communicate with her. She is not in there she is someone else.’
Warning signs
Looking back Emily said there were signs something was wrong from around Kaci’s eleventh birthday in October 2016. It was around this time her hearing and behaviour started to worsen.
But it wasn’t until her speech failed that the condition fully set in and left Kaci house bound.
Kaci was due to start Radyr Comprehensive Secondary School on Tuesday, leaving her family devastated that she is missing milestones.
Kaci’s family is appealing for help to fund private treatment and speed up the diagnosis
Now they are hoping to raise enough money to get Kaci private treatment, in the hope it will speed up a diagnosis.
Emily said: ‘I do accept that we are lucky to have the NHS but it seems like it’s taking ages.
‘She is getting worse. Two weeks ago could choose what she wanted and now that has gone.
‘Her brother Jaxon is scared it could happen to him. I can’t tell him the truth because I don’t know what it is.
‘Even if it was something sinister I would rather know.’
The family have been told it could cost up to £250,000 to get private treatment for Kaci. So far they are looking to raise £5,000. To donate visit here.