Brighten Your Day

Seven years ago, my wife and I had to take our five week old daughter off of life support, by far the hardest and most painful decision of our life. Our daughter, Alle Shea, was born with the rare bone disease called Osteogenesis Imperfecta (also known as Brittle Bones). At birth Alle Shea’s skull looked like a cracked egg on the x-rays. She also had multiple fractures in her arms and her ribs, her legs, and her wrist. We had no idea she had this disease until the day she was born; all we knew was something was wrong during the pregnancy. The day Alle was leaving us, we were able to take her outside on the hospital deck and hold her in our arms until she passed away. She opened her eyes one last time, and looked at us.

Now, we had two choices that day: we could have let the grief over take us, or we could take that grief and turn it into a positive. Since that day, my wife and I have worked tirelessly volunteering our time hosting fundraising walks, special events, and talking to students and the media about OI. We even contacted hospitals to try to get them on board with our cause - and this is the battle we are still fighting. Over the seven years, we have volunteered thousands of hours, and we fund just about everything with our own money. February of 2015 we started OI Care for You program. We send stuffed animals like Beanie Babies, Webkinz or any type of small sized stuffed doll to children with OI in the hospital for treatment, surgery or home recovering from a break. We think every child should have a Snuggle Buddy.

Each one brings a smile and comfort to a child with Osteogenesis Imperfecta (OI)

Here is what a mother said to us about the Snuggle Buddy we sent to her son:

"You sent one to my son and it helped a lot with his mood after a bad fracture. (he still sleeps with his snuggle buddy)"

We had OI families come from neighboring cities and towns and thank us for doing what we do and giving them another way to show support for a family member with OI.