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recognize him as his nephew. Psychologists at the Hospital said
he was jealous, but this was not the case. Our children with PWS
are not stupid, they have a simple but clear and precise logic that
we “normal people” often do not realize. To recognize Alessio
as his nephew was the same as admitting his defeat and to be
different with no hope to be a father himself too. I took Daniele
with me to Brazil last February to offer my wife a period of relief,
as I was leading a group of 40 tourists to visit the South of this
Country where a large population of Italian origin lives. At the end
of our program we visited Bairro da Juventude, an Institute run
by an Italian Priest, Father Vincenzo Lumetta, who takes care of
over 1,500 children who live in the poor and degraded outskirts
of a town in Santa Caterina State. Children who have not enough
to eat or have not enough clothes and often suffer any kind of
violence. Children who can have a future only in this house where
they can find love, food, clean clothes and especially a good
professional education, so they can get a job when they finish the
internal school. As I am personally involved in helping this mission
to support these children with individual sponsoring of Italian
families that we call “distance adoption”, I always take people I lead
on tours there, as they usually adopt many children and provide
the money they need to be properly followed and continue their
studies. I was too busy to follow my group of 40 persons and I
did not realize that my son Daniele chose a boy and a girl, took a
form and filled it completely with all data to become their “father”.
While I was in the office together with Father Vincenzo and had
just made my annual donation to the Institute, the door opened
and a shiny Daniele came in holding a boy and a girl by hand. He
was excited, but at the same time he was afraid of my reaction,
as he did something important without my permission. He first
looked at me and then said: “Father Vincenzo, I adopted these two
children!”. Father Vincenzo who knew about Daniele’s crisis smiled
and said: “They are yours! Your father just paid one year fee for
both.”
I will never forget the gratitude and happiness in my son’s eyes.
He gave me a long strong hug and then introduced me to my new
grandchildren João Pedro and Ana Alice. Then Daniele asked me
to give him my mobile phone. He phoned my wife first and said:
“Mom, I made you Grandma twice!”, then he phoned his brother
and proudly said: “Now you’re uncle too!” and then he said the key
magic words that made me cry and understand the nightmare
was over: “How is my nephew Alessio?”.
A few days later I brought a new Daniele back home, the happy
smiling boy we knew, more mature and more careful now. He
was no more a child, but the responsible father of João Pedro and
Ana Alice. Since then our life has changed and our son Daniele is
a wonderful uncle to Alessio and went back to work as a volunteer
guard at the local Municipality. He always talks about his children
and proudly shows their pictures to everybody he meets, as all
“normal” parents do. He writes to themquite often and they answer
to him and have exchange of drawings they make, hoping they
will be connected soon by Skype, so they can talk directly and see
each other on webcam. Once again our son with PWS is surprising
us. He found the way out alone and the perfect solution to his
problems. He did not know the causes, but he realized he could
not have biological children in his life, so he found the easiest way
to get his own family anyway. His life has changed completely and
everything is finalized to his international family, so he is taking
care to save or earn the money he needs to pay the annual fees,
he often writes emails or letters to them and get organized to
send gifts or wishes for their birthdays or for Christmas. We are
planning a trip to Brazil with Daniele every two years to see how
our grandchildren are doing and this is really the best therapy we
can offer our child and ourselves too… a therapy of love.
Long ago a mother from Venezuela asked my wife Maurizia which
was the secret she had to raise our son Daniele so well. This was
her answer:
Intuition
Good sense
Trusting
Love
Dear Alicia,
you are talking about a secret, which in reality does not exist, so I
cannot reveal it to you.
Since Daniele was born 26 years ago when few doctors knew the
syndrome in Italy we followed our
intuition
or parents’ instinct.
We had precious advices from doctors, of course, who told us
which diet to follow and exercise but they were giving general
suggestions about a disease they had not direct experience of.
We took note of all advice we got but at the end we preferred to
continue also our way. For this reason after the intuition we added
Daniele and their sons.
[The important role of Parent Organisations to follow patients affected by Rare Diseases - Giorgio Fornasier]