I’ve been hinting about this for a while, but I was told that we weren’t allowed to share it until now — lawyers were involved. Several months ago, our family was asked to participate in a project that bluebird bio was working on. They wanted to include short videos sharing different ALD stories to a new website, www.navigatingald.com. A (much needed) effort to educate the medical community and newly diagnosed families.
Bluebird bio is a bio tech company who has been working on a treatment for ALD – gene therapy — a trial that has been very promising for our community. But, bluebird bio didn’t just want to stop at finding a cure, they have been determined to educate both the medical community and those families that are hearing the letters A L D for the first time.
We were happy to participate, but did wonder how bluebird bio was planning to represent our family. Hoping that it would be honest, but not difficult for us to watch and to share. When I first watched the video, I was overwhelmed. Very proud of where our family has landed and also profoundly aware that many would not see our story as a “success story”.
Our family’s ALD story WAS a success story 13 years ago. Jack survived. Jack survived having a late diagnosis and a transplant at a hospital that was learning about the disease as we all were. Honestly, the fact he left the hospital with his vision and hearing and ability to walk was nothing short of a miracle.
Now our story is an example of what newborn screening and new treatments are going to prevent. Proof of how complicated life can be without the benefit of an early diagnosis and having time to find a team so that you can monitor your child and get them treatment when/if needed.
Of course there is part of us that pauses to wonder — What if we had known when Jack was born? What if we had known just a few months earlier?
We know the answer, but we can’t change the past — we can only help to change the future.
Thank you bluebird bio for allowing us to be part of this incredible project.
Take a peek at our ALD story and then take a peek at the other stories. All beautiful, honest, raw and helping to change the future of ALD.