Choosing to Turn Our Grief Into a Positive After Losing Our Daughter to a Rare Disease

If you ask me, heroes are born, not made.

Six years ago, my wife and I had to take our 5-week-old daughter off 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 (OI, also known as brittle bone disease). At birth, Alle Shea’s skull looked like a cracked egg on the X-rays. She also had multiple fractures in her arms, ribs, legs and 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 overtake 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 six years, we have volunteered thousands of hours, and we fund just about everything with our own money. We are (as far as we know) the only constant awareness for OI in all of New York state.

We have received many honors over the years for our volunteer work. The OI Foundation presented us with their President’s Award for being the top volunteers of the year, and the New York State Assembly presented us with a proclamation recognizing our hard work. The city where we live made a proclamation for three years in a row declaring the first week in May as OI Awareness week during the OI Foundation’s awareness program.  We have received an outpouring of support from the OI community, thanking us for all we do to bring OI out from the shadow of other diseases and disorders that everyone may know and more easily relate to. We also collect Beanie Babies and Webkinz and mail them to children with OI who are in the hospital for surgery (many have to have many surgeries in their lifetime), treatment, fracture or are at home recovering.

But all of that pales in comparison to the lives we’ve actually touched. For example, a young mother who found out she was pregnant and that the baby had OI watched our video documenting Alle’s story, and she said it filled her with hope. She was very afraid of all the information she found online about OI, but our video helped her to regain the strength she needed to carry on.

As I said earlier, my wife and I talk to the students at schools we work for about OI and all the things we do to raise awareness. Alle’s story has inspired the students to want to help. The high school kids were very touched by her story, and the sophomore class held a fundraiser and raised over $800. They took on this endeavor — all on their own. The junior high students made baby blankets and donated them to the local NICU — in Alle’s name. One high school girl and two of her friends sold candy bars and raised just about $400. I am overjoyed by the outpouring of love and kindness.

Many people talk about the joy of volunteering, and I have to so say there is no greater joy. It’s a great feeling of selflessness. I cannot describe the feeling I get when someone calls, emails or comes up to you to shake your hand and say, “Thank you for what you are doing for OI.” It humbles you like nothing else. When I see mothers who were advised to terminate their OI pregnancy, and know they did not because of what we do… that is a feeling that I cannot describe in words.

As I write this, the tears are falling. They are tears of great sadness and tears of great joy. I know we are honoring Alle Shea in the best way can, and my little girl — who not many got to meet — has touched so many lives for the better.

This why we volunteer our time without question.

This is why Alle Shea is our great hero.

Follow this journey on The Alle Shea Project.

Lead photo source: Thinkstock Images