Monthly Archives: February 2020

Class of 2020 Challenge & Rare Disease Day

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Are you sick of the Class of 2020 Challenge on Facebook?

I found all the baby photos adorable, but started to get a little tired of all the prom, varsity sport and college sweatshirt photos. ln fact, I was getting ready to toss my laptop out the window (although in our new ranch it might not have been such a big deal). I’ve already been through the torture of watching Jack’s former classmates have their photos posted all over social media as they graduated high school and moved on to their next adventures. And, now I was sitting watching their younger siblings move on, feeling a little sorry for Jack – for myself, until my friend Jen asked if I wanted to join in. “Jack’s class of 2020”, she reminded me.

Thanks Jen. 

When your child has special needs, they get the luxury of three extra years of education paid for by the state (we can only hope that that continues – don’t forget to vote in November).  Thanks to Jen, I realized that Jack IS class of 2020 and who cares if he’s three years older!

As I sort through the photos of Jack over the years, it’s a constant reminder of before and after ALD. A reminder of what life could have been. What life could have been had we known that ALD was lurking in his body. Had we known and treated him a year earlier, Jack would likely have been class of 2017. He would be in college asking for an emergency Venmo for the Uber he had to take to go to the Trader Joes to get Riced Cauliflower. Now we just have Anna making that request.

Saturday is Rare Disease Day – or as I like to call it – The Day When People with Rare Diseases get to Remind People WITHOUT Rare Diseases that We Exist.

I’m not asking for donations, just to read about Aidan’s Law , sign THIS and pass it along to every single person you know (I was asked to send it to 5 people, but that’s lame).

If you haven’t seen what a rare disease looks like at our house, take a peek HERE.

And, if you want to see Jacko’s Class of  2020 Challenge – here you go!

Love, Jess

She Can’t Sing

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She can’t sing.

I mean that seriously. She’s terrible. Like – hurt your ears bad. What makes it worse is that she tries. Sings loud and proud, but she shouldn’t. Because she’s dreadful.

I know it sounds mean, but we point it out whenever we have the opportunity. After all, isn’t that our job as parents? We can’t always just be applauding her.

Anna excels at academics, athletics, and artistic ability. She’s kind and graceful and beautiful. She’s generous and funny. It’s a little obnoxious, so we feel like it’s important to remind her that she will never be on The Voice or on Broadway. And, if she cares about people’s hearing — she should never even sing karaoke.

I wish I could take credit for half of who Anna is, but I think she is who she is because everything just came together and fit — like one of those 1000 piece puzzles with a huge amount of sky. You think there’s no way anyone can make it happen, but it does (at least on Block Island with Nana Sue taking the lead).

Anna was born determined and smart and when life changed for our family, she managed to get what she needed and continued growing and learning. I’m proud of all of her accomplishments, but when she does something that I can actually understand, I’m in awe.

Anna wrote a blog piece for Remember the Girls — an incredible organization founded by Taylor Kane, created to give a voice to women/carriers of x-linked diseases. Anna wrote about being tested for ALD. Her voice shines through in this piece and I couldn’t be prouder. She can’t sing, but she can write.

My Experience Getting Tested for the ALD Gene

Love you Banana.

Love, Momo

Meet the Torrey Family

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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.

CLICK HERE

Love, Jess