A mother has revealed how her toddler daughter’s rare skin disease makes her claw at her own skin and cower from an "evil monster".
Erin Smolinski, 38, described how her daughter Grace, suffers from autoimmune encephalitis – a life-threatening condition that causes the body’s immune system to attack healthy brain cells and organs to swell.
The condition attacks her brain, causing her to hallucinate about a sinister figure she the attempts to escape from.
Grace also suffers seizures, as well as a loss of ability to walk and speech problems.
After she was rushed to Lurie Children’s Hospital in Chicago, USA, Erin, a teacher, and her husband Larry, 37, feared for their daughter during what she described as "the worst experience" of their lives.
The mum-of-three said: "Grace had been experiencing seizures over a number of weeks after we came back from a vacation in Florida.
"One night she had a really long one, which lasted seven minutes and our neurologist told us to seek the help of a specialist, which is when we brought her straight downtown to Lurie.
"Within hours of getting to Lurie, her speech started to decline. She was a very vocal child and was capable of telling full stories, using full sentences.
"She went from that to only being able to say syllables. She went from singing whole songs from the movie Moana – to hardly being able to say ‘Moana’.
"We were about to be discharged when we asked if we could see the neurologist one more time.
"She came to look at Grace and went through the videos I had of her talking on our vacation, to now when she couldn’t even string a sentence together.
"Grace was losing her ability to walk and she started having these fits which we thought might have just been tantrums because she was in the hospital.
"She would try and climb out of her bed screaming and rip out her IV. We couldn’t console her.
"It was very out of character, she wasn’t the type of child to throw tantrums. She suddenly became really afraid all of the time.
"She seemed to think there was someone else in the room, and she seemed scared of that person. It was terrifying. I wondered what she was seeing. The nurses told me she was likely having hallucinations."
Grace had a spinal tap to support the diagnosis, but her neurologists began to treat her for autoimmune encephalitis immediately due to its seriousness.
She was treated with steroids and immunoglobulin and began to improve, but then went into cardiac arrest and was rushed to the hospital’s paediatric ICU.
Erin said: "We were looking forward to going home when Grace had a massive seizure and she coded.
"I just broke down as I watched what felt like 20 people work on her. She was intubated and it was an image I will never forget.
"In those frightening circumstances all you can do it flash forward to the future and will your child be there."
Thankfully Grace recovered and was released after two weeks in hospital. She then began a monthly regime of a chemotherapy drug, to help prevent a relapse.
Erin and Larry, who are also parents to Elizabeth, five, and Eddie, 18-months, credit the doctors who took the initiative to treat Grace before an official diagnosis, which saved her life.
Erin said: "I’m very lucky that the doctors at Lurie took the initiative. She would have just continued to rapidly deteriorate."
Grace needed a lot of help at home as her balance was unsteady and her speech had deteriorated, but has now returned to preschool.
Erin added: "Luckily we had a baby boy learning to walk and a daughter who pushed Grace to use full sentences, so I think that really helped her.
"She recovered quite quickly. She returned to preschool a few weeks later, which amazed doctors. There is a chance of relapse and that terrifies me.
"Although she is off her anti seizure medication, she still gets IV and IVIG once a month. This will go on until the second anniversary of her illness in April.
"We haven’t noticed that Grace has been impacted cognitively, we will have to wait until she goes to school. Right now she’s doing great.
"Grace is a normal three-year-old who loves her baby dolls and her scooter. We feel lucky every day."
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