Leoni's fight against NCL

A silver lining on the horizon

The enzyme-compensational therapy in Göttingen had great successes on that field with animal testing.
Unfortunately it will take million euro-amounts and another five to ten years of research till these experiments
can be used in a clinical context. After this realization from Göttingen our moods were on a new low-point.
Leoni is feeling worse again due to the change of her drugs. We try to reduce the twitching of her hands and upper body
with Dopamine. I write a mail to New York in the week before Christmas. We have sent Leoni's genetic results already
ten days ago and did not receive an answer yet, therefore I am asking about any news.
I did read that at the Weill Cornell Medical College they do genetic therapy research, and that they already prepare
for the second clinical testing.
In the afternoon Annie Jeong calls me from New York and tells me that Leoni is in the shortlist for the genetic therapy.
Her call and the necessity to talk to her in English did confuse me a little bit. Therefore I asked her again
if I did understand her in the right way that we should come to New York for pre-examination.
She approved but also pointed out that this pre-examination does not guarantee the final registration for the genetic therapy.
Furthermore she told me that we have to pay the expenses for the flights and the hotel by ourselves the rest
is taken care of by the university. Than she asked me if it would be possible to arrive in New York in February
or by the end of January. I told her that we can be in New York already tomorrow. She laughs and promises
to writ me a mail as soon as she has the exact date for our appointment and ends the talk with wishing me happy Holiday.
I am so nervous that I can not answer anything suitable, therefore I keep saying "thank you".
We stopped giving Leoni Dopamine and started again with Valproic acid. Leoni is feeling better again and with our hope
raising about the program in New York we still have a merry Christmas together.

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