Monday, 12 November 2012

An Ambassador for IPWSO!

Daniele ~ The Village Boy Becomes a Man

New parents of a baby with Prader-Willi syndrome (PWS) typically are devastated because they get on the internet and read about children with PWS - low IQ, lack of social skills and behavior problems.  They envision their beautiful baby someday becoming this person who grabs food from others, digs in garbage cans, and cannot be taken out in public.   The people who wrote those articles and did the studies obviously never met 36 year old Daniele, who lives in Italy.  He is the son of our IPWSO Executive Director, Giorgio Fornasier.   

Daniele - paying for dinner!
  To meet Daniele is to be charmed by him.  My latest example was a recent trip to Italy after driving with the Fornasier family to Germany to provide PWS education at the ESPE conference.  Daniele insisted (as he does with all of their international guests) to pay for one nice dinner for all of us. His dad drove him to the bank after his work day ended, but the bank had just closed.  Daniele knocked on the door and told the bank teller that he needed to get some of his money to pay for a special dinner that night.  His dad said he would lend Daniele the money, but Daniele said no, it must be his money.  Daniele asked to speak to the bank President.  The bank President came to the door and after Daniele explained the importance of his request, the President agreed to let him come in and make the withdrawal! 

Over the years, I have observed that in any restaurant in his area in Italy, Daniele is allowed to go back into the kitchen and greet the staff.  He also gets big hugs from restaurant owners, and everyone on the streets of his village knows and greets Daniele.  He always has a smile on his face and a swagger of confidence.  Daniele is the altar boy at mass every week, and also prepares the altar for service.  Daniele also has “adopted” two children in Brazil and pays for their care out of the money he earns.
As far as the male Italian charm, I will never forget the time we were driving and Daniele was sitting between Pam and me, with arms around us and giving us kisses on our cheeks.  His dad told him to cut it out.  After Daniele responded in Italian, I asked Giorgio what he said.  He told his dad, “You are just jealous because you are married and I am not!” 
Compared to anyone with or without PWS, Daniele is exceptional – but so are many of our children and adults who have PWS.  Their charm, their generosity, their capabilities are not what studies are made of – but are the qualities I wish we could share with all of the new parents before they sink into despair.  I wish they could meet Daniele in the hallways of the hospital right after they get the diagnosis.  With a big smile, he would shake their hand, give them a big hug, and tell them they have a beautiful child of God. 

Contributed by Janalee Heinemann, IPWSO Vice-President
PWSA USA Medical Adviser