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.
Love, Jess
smiles and duct tape 
Beautiful! Just beautiful Jess! I am SO glad to finally “meet” you and your family in real life outside of the printed word :-). To heat your voices and see you all in action is just amazing and I thoroughly enjoyed it….what special people you all are and such gifts to the ALD world! I was a very small part of Bluebird Bio’s research for this and couldn’t be happier with the final product…and they did a wonderful job with your family’s video. Just perfect! (Our family was filmed many years ago pre-symptoms and pre-transplant about Lorenzo’s Oil…boy, it sure was adventure for a day when they invade your home with cameras!) I think it will all give hope to families facing this diagnosis. Well done Torrey family and God bless!
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Thank you Julie. The cameras were here for a couple of days – we almost missed them when they left. It’s not the same showing your son or pouring coffee without a couple of guys with cameras filming;) I would love to see the film of your family. Can you email it to me or send me a link. Best, Jess
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Thank you Jesse. Wow. You are a fierce mother, you are a fierce family. Big love, Liza. In Chicago!
On Tue, Feb 11, 2020, 8:04 AM smiles and duct tape wrote:
> smilesandducttape posted: ” 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 includ” >
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Love to you Liza! Hope to see you back East soon.
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Wow. I can’t count how many tissues I went through.
This was SO Beautifully done!
My hopes are more and more people
are educated about ALD.
Love that Jack and All of you. He IS Amazing and Special.
I know he always puts a big smile on my face like the rest of the Torrey’s .
xo
“Aunt” Darcy
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Love you Aunt Darcy – no need or quotes – you are Aunt Darcy!!!!
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Jesse, I couldn’t have loved this more!! It was so nice to hear all of your voices and see all your smiling faces in action. I maybe even got a little nostalgic for the transplant pics. 😉 I see your favorite neurologist every once and a while and he’s actually coming to lecture to my PNP students. Your story continues to educate health care providers, too! Sending big hugs and lots of love to you all. xxooxxoo
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You were such a wonderful part of our team – you made things as easy breezy lemon squeezy as they could be. PLEASE share the website with as many people as you can. ALD needs more medical professionals to familiarize themselves with the disease. We are all sending you love and licks (the licks are from the boy)!!!xoxoxo
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You are a warrior and I admire your passion in sharing your story and the stories of other families dealing with ALD. You have exposed yourself and your family to the truths of your challenges and so many people will benefit. With so much love and admiration!
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Thanks for the kind words but I promise Jack makes it pretty easy. His smile holds us together!
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I just waited for Jim to get home to share this with him. It’s an incredibly hopeful video about a beautiful family. Thank you so much for sharing your story.
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Jack is a very happy young man. Hope to see you guys soon!!
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Jesse, I watched and listened to your story. Jack is a remarkable young man who is blessed with a wonderful family. I remember meeting Jack on BI years ago. If memory serves me he and I enjoyed a dance together in Ray and Sues’ living room. He has come so far with the help of those who love and care for him. Tell him Bob and I say hi! Bless all of you. Natalie
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Sending love to you and Bob. Jack would love another dance with you soon!!!
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