The reasons of the Foundation
Rignano sull’Arno, November 29th, 2007
Good morning everyone, I’m writing you because on February my boy Giuseppe has been diagnosed a mitochondrial disease due to complex I deficiency. Muscular biopsy has revealed a very high grade of enzymatic impairment and therefore a devastating disease. The medical staff did not give me many hopes but, thanks to the prescribed vitamins, Giuseppe feels a little bit better. He is 18 months old, very beautiful, energetic, able to eat autonomously but unfortunately he is now blind and can’t stand up or sit. The immense love he feel for him makes me think that we will find a cure and, if miracles are real, may be the ability of Giuseppe to fight the disease is already a miracle.
The genetic screen ran at Carlo Besta Hospital in Milan did not give any positive result, so that we still do not know the genetic abnormality that threatens the life of my little boy.
My husband and I, therefore, decided to create the Giuseppe Tomasello Foundation with the aim of funding and promoting research on mitochondrial disorders due to complex I deficiency.
Its devastating to think that we are able to donate life to a such a beautiful creature but unable to fight such a rare and almost unknown disease.
Of course we are perfectly aware that promoting research on this issue does not mean that we will find the cure right away, but we do think that it may help to sensitive people to these tremendous child disorders and, hopefully, find efficacious treatments in the future.
We think that by doing so may be we will not be able to save our little boy, but perhaps that of other children in the future, so that my son’s death it has not been vane and meaningless.
Thanks for your understanding