One evening in March 97, we were just a small group of 6 or 7 young men and women and we met at a friend's place. We went on for hours talking about ourselves, our experiences, our families and, you know how it happens, gradually we realised how similar we were, even if different. You may ask what is so special about some people meeting after dinner and drinking good wine and eating snacks. Actually nothing if it wasn't for the fact that that night we hardly knew each other, we didn't even know our hostess who had organised the meeting, but above all each of us had a brother or sister with Down's Syndrome (DS)!
Marco e Anna
that very first meeting we told each other such intimate
things that none of us had even confided to his/her best
friend, his/her parents and may be neither to him/herself.
We found out that our hostess friend, Dr. Anna Zambon, had
organised what is technically called a “self-help
group”, a free and informal meeting in which each
of us has the opportunity to tell what it means to have
a brother or a sister with DS, how much this situation has
influenced our life, our choices (also professional), our
personal relationships and how much it will affect our life
when our parents are no longer here.
During these last few years, the number of meetings and
participants has considerably risen and all of us have understood
the deep difference of our role in respect to that of our
parents, as brothers and sisters of people with DS. We are
aware now of our different approach towards the Syndrome
and of our unique bond of affection with our disabled brothers
Realising such a “difference” urged us to create
the Sibling Group. This is not an association, but a spontaneous
group, with no intermediation from parents, associations
or from official bodies in general.
Two years ago we started a mailing list to keep in touch
with each other and to give each other information and advice.
Everyone is welcome to join us whenever in need, without
having to participate in all of our initiatives. Creating
a self-run and independent virtual space, in which all siblings
can talk about themselves, either about DS or not, it has
been for us like reaching a huge emotional target in our
Recently, we have even started to spread the knowledge of
our experience to all those bodies involved in DS in Italy,
including official organisations such as the AIPD (Italian
Down’s Syndrome Association).
this web site represents the last step of a way that led
us to the conviction that we brothers and sisters must be
considered active partners in the global dynamics of DS
taking into account that, at the end of the day, we will
be living the longest with our disabled brothers and sisters.
We hope that even you, one day, will want to talk about
your brother or sister with people who in spite of the fact
that they don’t know you personally know exactly what
you are talking about.
Italian Sibling Group