Vera Faludi’s Parent Diary: January 2014

I have not written an update in ages although years ago I was constantly writing about Jessica’s condition. Now it is pretty stable and nothing like the “wild” years when we were fighting seizures round the clock. Our main issue now is lung trouble and poor oxygen saturation which is mainly due to hospital germs obtained while hospitalized over the years.

Jessica seems to have mainly myoclonic jerking in her vocal cords and the sound of it can be quite dramatic. Apart from one arm, her other limbs are not affected at all anymore. She has become more and more cognitively aware and is fighting to say something but nothing will come out in the way of words. Maybe given that they make it this far Lafora childrens’ seizures will stop. Nobody knows…

Jessica is more tired than she was but seems to have accepted her situation and gives us wonderful smiles. Deep inside I am sure there is an immense sadness which she is unable to relay and in my opinion losing your speech is the worst thing that can happen. Even if a cure does nothing else, regaining speech is a priority wish.

I do hope this cure will come soon as 23 years of this is taking away our strength. Jessica will be 40 in April and I am 81 and I pray that we will live to see a cure.

You are all in my thoughts and I admire all the efforts that are being made for all our children.

With love,
Jessica’s mom