Marija's Story

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Niamh's Journey

  Our little girl Marija was born on November 28th, 2008 in 37 week of
  pregnancy as healthy child.

In first three months of life sometimes she was very sleepy and sometimes we could not stop her crying. She had some chewing movements but we did not know that they were seizures.

Her first obvious seizure was in February 26th 2009 when she was three months old. That day we were admitted in city hospital in Banjaluka (Bosnia). She had seizures with deviation of head and eyes and chewing movements. Very soon she was in epileptic status.

Her doctor neurologist did not know what it was - she told us that she never seen anything like that.

marija 4
marija 2

 
  Marija had seizures almost continuosly with deviation of head and eyes, jerks of both limbs on left or right
  side, chewing movements and salivation.

Her EEG showed total chaos, discharges in both hemispheres. She was given phenobarb, rivotril and B6 vitamin but these did not give results.

After 20 days we moved in Institute for mother and child in Belgrade (Serbia). All her blood, metabolic and genetic test were negative. Her MRI scan show delayed myelination.

When Prof. dr. Milena Djuric saw Marija`s EEG, she told us that Marija have MPEI and explained what it was.

  We started with new therapy stiripentol, clobasam, keppra and phenobarb.

At that time Marija was sleepy, floppy, she stopped making visual contact, lost head control, lost motor and social skills and we started to use feeding tube. Her seizures did not stop and she stilll has 5-6 seizures a day.

At the same time we were in hospital, Marija coughed up blood.

After testing, the doctors told us that she had idiopathic pulmonary hemosiderosis (IPH) so she started with therapy for this too with azathioprine and prednisolone.

We stayed in Belgrade hospital six months.

marija 3
marija 5

  Since then we are at home, but every two months we have to go to hospital because of pneumonia
  or bleeding from the lung.

She is in bad condition, she has 5-6 seizures a day, sometimes frequently, generalised hypotonia, she does not eat orally so we are using feeding tube.

But Marija has all the love in the world. Even if she does not smilie, even if she does not look at us, we know that she feels how much we love her.

She is our little angel.

Bojana, Milan & Marijas