Giana weighed 1lb 9oz with her younger brother weighing in at 3lbs 6oz. After 3months of back and forth to Pittsburgh we finally had both home by mid Oct. Dominc was born 100% healthy while Giana was born with a rare genetic brain disorder.

In Nov. she had surgery to have a feeding tube put in and a procedure called a Nissen Fundoplacation. In April she had a trach put in to help control her secreations. There is not a ton of information on this but you can learn more by googling Miller Dieker Syndrome. One of the biggest issues with MDS children is a seizure disorder. We are working on getting them under control now with different seizure meds. She recently started a new diet that is kind of like an Atkins diet, high in protein and low in carbs. Instead of her normal 15 to 20 seizures per day she has had 2 in the last 10 days, so that is good.

She is prone to respiratory illnesses and that is usually what takes the life of children with MDS. She is currently at Point Pleasant in Aliquippa while mom learns how to care for her and then eventually she will be home with her family. The prognosis for children with MDS is 2 to 4 years. She is a hero for our entire family. We thank the Hero Program for recognizing her as a real hero.

More information coming soon.