I had trouble falling asleep Sunday night. Ever had a big day that you just didn’t want to end? We had a whole weekend of fun and my mind was spinning with entertaining memories and picturing the giant smile on Jack’s face. This weekend was The Camp at Home — ALD Family Weekend thanks to The Painter Turtle, the wonderful Adler family, Dr. Van Haren and all the other ALD heroes/folks that made it happen. Watching the computer screen all weekend and getting to see some of our favorite ALD families was great, but for me it was seeing all the new families that really got to me.
I was told almost half of the people were families new to ALD. Most of them have been recently diagnosed through newborn screening (thanks to the incredible work of the Aidan Jack Seeger Foundation/ALD Alliance). These are perhaps the luckiest, unlucky folks around. Thanks to newborn screening their children have been diagnosed early with Adrenoleukodystrophy They have time to educate themselves, set up a team of doctors who understand the disease, and monitor their sons so that when – and IF – the disease starts to progress, they can start treatment quickly.
Unfortunately, this knowledge often comes out of nowhere. Imagine having a new baby and receiving a call a few weeks later saying that there was something that came up on their newborn screening panel. Imagine then doing more tests to confirm that your beautiful healthy son has a disease you can’t pronounce. Imagine sitting down at your computer and Googling a disease where much of the information floating around the internet is frightening and out of date.
Unlucky . . . But back to lucky.
My hope is that not long after getting the terrible news, these families stumbled on a Facebook page or found websites like https://aldconnect.org, https://www.aldalliance.org, https://www.bluebirdbio.com. They then met a few other families who were maybe several months are years ahead of them in their journey. They started learning that there are incredible doctors working with ALD and that with an early diagnosis, there are treatments and trials and hope. Then they heard about this incredible weekend where the entire community was invited to attend, free of charge, to meet more people, to hear from doctors about current trials and research, to hear from other families, to cook and to make art and to dance. Billie Eilish and Neil Young even gave the ALD community a shout out during the Saturday night “camp at home fire pit”.
I hope these new ALD families feel a little better about this “club” they were just forced to join.
I was asked to speak on a panel on Sunday that included several people who I’ve known and admired for years and one man who I have added to my list of ALD heroes. When discussing the plans for the panel, we were told that we should share our stories keeping in mind that many in the audience would be new families. My first thought was, it’s hard to make Jack’s story seem easy and light. Then I thought – I’m talking about Jack. Nobody is lighter than Jack! I started sharing our story with why Jack wasn’t sitting next to me. He was out for a quick lunch with his friend Monica and her beautiful/brilliant daughter, “If you think for a second that a life full of complicated challenges is sad and limited, think again. There is nothing sad or limited about Jack’s life.”
ALD = crappy disease/amazing people!
Question for you Jess…you mention Dr Van Haaren. Peter and I worked for years with a Dr VanHaaren at Kent Hospital in Warwick, RI. He and his wife raised three brilliant children and I’m wondering if this Dr you mention is a relative.
Keep sharing Jess! You inspire us!
I am not sure. Dr. Van Haren is the Director of the ALD Clinic & Neuroimmunology Clinic at Lucile Packard Children’s Hospital in CA. He is brilliant!