Inspirational and Motivational Stories

A Family Turned Their Grief Into Something Wonderful

  By Angelo Collazo • June 6, 2018 

 Nine years ago, my wife and I lost our first daughter, Alle Shea Collazo, to the rare bone disease Osteogenesis Imperfecta (OI). At birth, Alle had broken ribs, arm, legs, wrist and her skull had many fractures. Alle graced their lives for only five weeks. The day she passed away it was the first time we got to hold Alle without pillows and cushions between us. We promised to keep Alle Shea's fight alive by becoming advocates for OI - raising awareness and much-needed funds for the OI Foundation based in Maryland. We have no big corporation sponsors and little to no budget; we finance everything on their own.

We host many fundraising/awareness events, the latest event will be a comedy show in the next few months, all the money raised in memory of Alle Shea goes to aid in research and to grants to help people living with OI. Every year on Alle's birthday we have a special event at the Uno Pizzeria & Grill in Webster, NY.

OI will appear with equal frequency among males, females and among racial and ethnic groups, it occurs in approximately 1 in 20,000 births that is a 0.005% chance of having an OI baby. Many children with OI experience broken bones, surgeries and hospital stay, multiple times a year, which can be scary.

Therefore, in February 2016, we started a new program called "OI Care for You." We send care packages that include a small stuffed animal, stickers, coloring pages, and other ladybug themed novelties, sent free of charge to anyone that requests one for a child with OI. We either purchase the items ourselves or people have donated directly to this special program.

The idea behind the "OI Care for You" program is that everyone should have a little something to hold, to snuggle, and to help bring comfort and a smile during difficult times. Anyone, anywhere in the world who has, or knows of a child 14 and under with OI that had a recent break, surgery, or treatment, is welcome to ask for "OI Care for You" package. Requests may be sent via The Alle Shea Project email address (allesheaproject@gmail.com) or .

To date, we have sent over 161 packages to OI children in 40 states and 10 countries.

This new project is just one of the many things we have done in memory of Alle Shea. As part of our advocacy, we have held various activities including raffles, local group nights at local sports teams, and comedy shows fundraisers.

Over the 9 years, we have hosted 20 fundraising/awareness events, raised over $70,000 for the OI Foundation, did TV and radio interviews, had the town of Irondequoit, NY, the City of Rochester, NY, and the State of New York to proclaim a week in May as OI Awareness Week, and started the I Break for OI Egg Challenge.

"We promised Alle we will keep her fight alive...If it just us vs the world, the world will lose."

Never Ever kill anyone because think about their family. They will be very sad. Put yourself on their shoes. What would your family feel if they got the news you died? Think of the consequences.