A Queensland family is reeling after their youngest member was diagnosed with an extremely rare brain disease, leaving her with brain damage and unable to walk.
Lani Matulino was getting ready for school in her Logan home on May 20 when she suddenly suffered a seizure and was rushed to a nearby hospital.
After stabilising, the pre-kindergarten student was sent home, but only hours later she became very irritable and suffered another seizure as her parents, Maryanne, 40, and Fred, 39, placed her in their car to take her back to the hospital.
For the next few days, Lani suffered constant episodes during which she appeared to have a different personality, Maryanne told Yahoo News Australia.
“It was like Jekyll and Hyde. She was so unsettled and very irritable,” she said.
Lani was then taken to the ICU at Queensland’s Children’s Hospital, where doctors diagnosed her with Anti NMDA Receptor Encephalitis, an incredibly rare disease that occurs when antibodies produced by the immune system attack NMDA receptors in the brain.
The majority of cases occur in young adults and children, with women four times more likely to be affected than men, according to the Anti-NMDA Foundation.
The main symptoms include memory issues, sleep and speech dysfunction, hallucinations, delusional thinking, irrational movements of the arms, legs and mouth, and loss of consciousness.
“When they told us what it was, we were baffled,” Maryann said, adding that nurses recommended she watch the Netflix movie “Brain on Fire”, which highlights a New York journalist’s battle with the disease.
The mum-of-three said doctors are not sure what triggered it because she is so young but guessed it could have been a virus. A lot of older patients are found to have a brain tumour causing the disease, but Lani does not have one.
Although Anti-NMDA can be deadly, the majority of patients who receive treatment quickly can make a good recovery within a year.
Devastatingly, Lani was intubated and rushed into surgery after she lost blood circulation to her bowel.
To save her live, doctors removed 16 centimetres of her short bowel.
After removing her from the ventilator, the five-year-old “crashed” and it took healthcare staff six minutes to bring her back to life, Maryanne said.
As a result, Lani has suffered damage to the part of her brain that controls movements.
“We were told a few weeks ago that Lani’s condition will resemble a severe case of cerebral palsy,” the heartbroken mum said, adding that doctors said she might never eat, walk or talk again.
Maryanne said the “crash completely changed everything” and it’s been devastating for the whole family to see the typically “bubbly and cheeky” five-year-old so sick.
“It’s been a rough few months and we will always hold onto the hope that she will defy the doctors’ prognosis,” Maryanne said.
“Whatever the outcome is, we’re going to make sure we give her the best life possible with a lot of fun.”
A family friend has created a GoFundMe account to help the family during such a difficult time.
Maryanne said her family are so grateful for everyone’s generosity and asked for everyone to keep her in their prayers.
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