A worried mum told yesterday (Thurs) how her three-year-old daughter suffers from a rare condition which means she could be killed – by a common COLD.
Toddler Skye Warren’s immune system attacks her own brain when it reacts to viruses, causing her to suffer violent seizures.
The condition – Anti-NMDA Receptor Encephalitis – is so rare that doctors don’t know what the future holds for the youngster.
Her mum Melanie Slater, 25, said Skye struggles to walk as a result of the life-threatening disease.
She said: “She could go to bed and not wake up.
“Skye has no immune system and if she gets a cold, cough or temperature she could just relapse or worse still we could lose her.
“If she survives the attack she could lose the ability to speak, walk or anything that we take for granted and she will have to re-learn it all over again.”
Melanie and her partner Harry Warren, 29, first realised something was wrong with Skye when she was struck down with a cold in November 2014.
The couple, from Halesowen, West Mids., noticed she started having seizures as her immune system fought the infection and then attacked her brain.
Skye spent two months at Russells Hall Hospital in Brierley Hill, West Mids., as doctors tried to diagnose her condition.
She was then transferred to Birmingham Children’s Hospital and eventually had a blood and plasma exchange to replace the rogue anti-bodies.
Doctors then carried out a lumbar puncture which revealed she had Anti-NMDA Receptor Encephalitis.
Part of the condition means Skye also has behavioural problems and can’t accept anything that’s out of her control.
The condition is so rare that Birmingham Children’s Hospital have only ever dealt with eight cases in total.
Mum-of-two Melanie, who also has a two-year-old son Taylor, said: “She had a cold and like normal her anti-bodies fought the infection as they do with everyone else.
“But then they turned on Skye and started attacking her brain and she started having seizures.
“If the door shuts and she hasn’t shut it that sends her into a fit. If the light switch cord in the bathroom swings she goes crazy.
“Every time she gets a cold the anti-bodies build up and they attack her.
“That is when her behaviour deteriorates. We can’t do much with her and she doesn’t sleep, that is when you know she is having an attack.”
The rare condition also means her parents have to make sure Skye is constantly protected from any other illnesses around her.
Melanie added: “She goes to a nursery but when there is a bug going around we have to
pull her out.
“Also if she is seriously ill we cannot take her to A&E. Instead we ring ahead and a room is set up for her so she avoids any other infection.
“When she was first diagnosed we were told she had weeks to live.
“It is such a rare disease and Birmingham Children’s Hospital have only ever dealt with eight cases in total.”
* Anti-NMDA Receptor Encephalitis is a disease which occures when antibodies produced by the body’s own immune system attack NMDA receptors – proteins which control electrical impulses in the brain.
The majority of cases are found in young adults and children and females are roughly four times more likely to be affected than males.
Although the condition is life-threatening, the majority of patients go on to make a good recovery which is usually slow and can take months or years.
But the disease can be fatal with some patients dying due to cardiac arrest or from complications associated with the use of powerful immune suppressing medications which make them more susceptible to serious infections.