I am writing to you in an official capacity as President of the RING 14 Association of Voluntary Work ONLUS (Non-profit making organization for community work), but, actually, I would like to ask for your help with a mother’s heart.
When, in April of 2001, to our little Matteo, who was two years old, was diagnosed as Ring 14 Syndrome, we thought we had reached an important goal. In fact, a definite diagnosis is really an important goal, and we will always be very grateful to the doctors of the Children Neuropsychiatry and Genetics Ward of the Santa Maria Nuova Hospital of Reggio Emilia for giving us this information. Unfortunately, having a definite diagnosis does not always mean having also certitudes about the health of our loved ones, particularly when rare diseases are concerned, and so has been for us. The discovery of this rather uncommon genetic syndrome dates back to not more than ten years ago; in the meantime few cases have been diagnosed and few researches have been carried on.
So, with the energy and the will that only parents are sometimes able to find, we thought that maybe it was up to us to start doing something useful and practical for our child and for all the children like him. In May 2002, we have set up this association of families and we have been able to involve some eminent and qualified doctors, willing to study this syndrome and its related symptoms and to work out diagnostic protocols for all their colleagues at national and international level.
The doctors who are working together with us and we parents are doing really a lot for these children, but we still need economic aid to finance all the projects we are carrying on. Besides economic resources, which are necessary for the existence and the plans of the association, we also need many friends to help us for its daily work.
I have tried to make you understand just in a few lines what it is like to be parent of children affected by diseases so rare that not even doctors can give you certainties…but it is not easy! Thank you for the time you are devoting to us just by reading this letter and visiting our web site. If you should like to have more information, do not hesitate to get in touch with me by phone or by e-mail: it will be a pleasure to know you personally to talk about our feelings and to share our wish to go on together making something important.
President of Ring 14 Association and, most important, Matteo’s mother.