Leoni's fight against NCL

The diagnosis

The first result was indefinite. The NCL1 was clearly excludable but there was something wrong with the NCL2 examination.
The TPP1 enzyme was missing, which would be an indicator for NCL, but the so called control-enzyme was also very low.
Maybe something did go wrong with the blood testing, we repeated the test, another three weeks of waiting and fear.
The last week of November we stay in the 'Sterntalerhof'. Leoni's condition got worse over the last few weeks.
She does not talk anymore, she does not look into her books anymore she just turns pages without any joy.
She almost does not react when someone talks with her, she even ignores her beloved 'Barbapapas' on TV.
On Thursday our doctor called us and asked where we were. He actually did not want to deliver the bad news over the phone,
therefore he went to our house. Maria told him that we were in the 'Sterntalerhof' with Leoni this week.
In retrospect it was good that we were in the 'Sterntalerhof' when we got the final diagnosis NCL.
The team supported us instantly and the psychologist even came at 8 o'clock in the evening to talk to us for a very long time.
At this point a big "Thank you" to all of you and also to Leoni's doctor, Prim. Hauser,
for supporting us in a great way and also for the personal engagement.

⇐vorherige Seite Index nächste Seite⇒