Enjoying some snuggle time

Friday, November 5, 2010

Meet Evan Fasciano

Did you know that there is a relentless disorder that receives virtually no attention from the media and very little from the medical field, and yet it affects as many as 1 in 400 people? This is called ICHTHYOSIS. It is a genetic disease that in its mild form is a daily nuisance, but in its most severe form, creates many challenges for the affected person and their family.

Ichthyosis is a term applied to a group of more than twenty rare genetic skin diseases characterized by dry, cracked, scaling and thickened skin. Each year, more than 16,000 babies are born with some form of ichthyosis. The is disorder affects people of all ages, races, and genders, and also results in medical compilations like dehydration, infections, chronic blistering and overheating.

Please meet Evan Joseph Fasciano. Evan was born on June 9th of this year with a form of Harlequin Ichthyosis. Harlequin refers to the most severe and rare form of ichtyosis. Evan was born 2 ½ months premature and spent those first months of his life in the neonatal intensive care unit at the Yale Children’s Hospital in New Haven, CT. Evan was given his name due to its meaning-‘Young Warrior’, which he has proven to live up to every day since June 9th.

Evan’s daily care requires tremendous effort on the part of his parents, Joseph and Diane Fasciano. Multiple baths a day and various lotions are applied every few hours. Evan’s skin will requires a meticulous maintenance program for his entire life.

Evan’s story, and life have only just begun. He has defied the odds, and risen to the challenge he’s been faced with. Evan and his parents were most certainly a match made in heaven, as seen by his friends and family, every day.

Please stay tuned to this site for fundraisers to help this family.  If anyone wants to help this family directly or has any fundraising ideas please email me directly at jlefkowski@gmail.com.  Thanks everyone for visiting and keeping Evan, Joe and Diane in your thoughts and prayers! 

Thanks Joe and Diane for sharing your wonderful son with all of us!  Now let us help you out!


  1. Joe, Dede and Evan. I love you all so much and I just wanted to say how truly lucky Evan is to have such caring, strong and wonderful parents. Evan is beautiful and I am so looking forward to meeting him this Christmas. Love you all. 'Brother Rob'

  2. Best wishes and good health to Evan and his family.

  3. Is this blog still being maintained... Is Evan doing Okay? Hope all is well.