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Parent Diary

 

Meet the Children of
Chelsea’s Hope

 

In Memoriam

“Those we have held in our arms for a little while, we hold in our hearts forever.”

Jessica Faludi - 33, Sweden

This is my lovely Jessica, who so bravely has been fighting Lafora Disease for 17 years. In spite of the horrors she has been through during these years, her eyes are sparkling and there is a friendly smile for everybody.

She had dreams like all teenagers, when the disease struck here. First and foremost she wanted to be a mama with many children. With her caring attitude she would have been the best of mamas.

Now she cannot talk, walk, eat or turn in bed, but she enjoys the everyday life with music, listening to discussions going on around her and outings with the car.

Contrary to the sinister prognosis, she has become cognitively better these past 8 years and she is now fully aware of everything going on around her.

Jessica is 33 and she has lost so much time, so please let there be gene therapy very soon. She is full of life and energy still and deserves some beautiful years before it is too late.

I would like to thank Professor Delgado-Escueta and Dr Berge Minassian for the encouragement they have given during the years when we still knew very little about the disease and they informed me of the milestones they reached over time.

- Provided by Jessica Faludi’s Parents

       

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