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Ludovica

She has been moved to a dedicated rehab hospital. She stayed there for 3 months…….

 February 2016: Ludovica was 9 months old and got the flu. The first day she had fever and everything but

seemed to be normal, the doctor confirmed the diagnosis: a flu virus. The day after the breakfast, she
threw up and we realized immediately that she didn’t respond to any stimulus and we took her to the ER,
on the way to the hospital she had convulsions and tremors.

She has been admitted to intensive care, she remained unconscious for 1 week and her condition got worst
little by little up to the induced and she was very close to pass away. The diagnosis, confirmed by MRI was
viral encephalitis NDD with permanent brain injuries.
After a week, she was treated with steroids and IVIG and her conditions got better and she woke up. She
had an left hemiparesis and on the right part of the body she had problem to move correctly hand and leg.
Few days later she started to eat and drink autonomously and she started to move a little bit right leg and
right arm and hand. 

 

 

She has been moved to a dedicated rehab hospital. She stayed there for 3 months, step by step she recovered every movement and her cognitive functionalities had been judged by the doctor aligned with a
normal 11-12 baby months old.
We went home tired but convinced that we overcame the disease. Unfortunately on July 2016 she got a
parainfluenza virus and the effect was more similar: fever, vomit, convulsions and again we ran to ER.
At the time a doctor started to suspect she could be affected by a severe extremely rare neurologic disease
called ANE. The treatment was the same: steroids and IVIG but in this second episode, the recovery was
more slow and painful then the first one. From MRI we discovered she had new brain injuries. Also in this
case she had been for 3 months in the rehab hospital and when we went home she wasn’t still completely
recovered.
In the meantime, all our family did the genetic test to identify the RANBP2 mutation: the result was, only
Ludovica was affected by ANE (a De Novo mutation).
Ludovica now is a 4 years old baby girl with a cognitive level comparable with a 1,5 years old baby. She
walks even if she unstable, she has got epilepsy that we’re able to take under control with a specific drugs
mix. She’s been doing rehabilitation therapy every day.

The signs left by the disease are clear and relevant but she is anyway a beautiful,smiley, happy, curious, affectionate & sweet little baby girl.