Irondequoit, N.Y. - Alle Shea Collazo was so fragile when she was born, her parents couldn't hold her when she cried or change her diaper.
Alle was born with Osteogenesis Imperfecta. A form of brittle bone disease.
Hers was a rare case, because the genetic disorder is usually inherited.
In Alle's case, it was caused by a gene mutation.
Doctors told the Collazos there was only one other reported case like this in the country.
Still, they thought they would be able to bring their daughter home.
But complications developed because Alle's ribcage wasn't developed properly and her lungs didn't function correctly.
She passed away at five weeks old.
It was then that Angelo and Kim finally got to cradle their daughter in their arms.
They were so grief-stricken but knew they wanted to do something to honor their daughter's memory.
They held walks and other fundraisers to raise money to find a cure for Osteogenesis Imperfecta or O. I. They raised nearly $30,000 for the National O.I. Foundation and were recognized with the Presidential Volunteer Award.
Every chance they get, the couple speaks to schools and groups about this disorder and shares Alle's story.
They are not only remembering Alle, they are supporting others who live with this disorder.
The Collazos were blessed with daughter Ella (Alle spelled backwards) a year after Alle's death.
She is learning all about her big sister, whose pictures are all over the house.
Ella will join her parents at a fundraiser this Saturday at Pizzeria Uno in Webster.
All of the money raised will go to the Osteogenesis Imperfecta Foundation.
The family will also celebrate what would have been Alle's third birthday.