We all have “friends” on social media who we don’t really know — let’s call them stranger-friends. They find their way to your feed through mutual friends or colleagues or common interests or whatever. I have over 1000 friends on Facebook and there’s nothing quite like a birthday to remind you of who’s on your page – friends from elementary school, high school, college, graduate school, mommyhood, the neighborhood, ALD, CCI, CPNJ, and on and on and on – including all those stranger-friends.
Sunday was my 48th birthday and I’ve spent much of the last couple of days reading through posts. Hundreds of posts and I’ve read each one. It’s amazing to pause from the chaos of the holiDAZE and think of all the people in your life (and on your computer). Birthday wishes are always fun and this year I feel blessed that I’ve managed to meet some of my stranger-friends in person.
Over the years, there has been a growing percentage of people in the ALD community on my Facebook feed. Many are people that I feel very close to because of shared experiences, but most of them have been stranger-friends — I’ve never met them in person — until this year. Thanks to Smiles and Duct Tape, I’ve had the opportunity to meet a lot of ALD folks – people living with it and/or fighting against it. This past weekend I had another chance to meet some of these people.
My mother, Anna and I attended this year’s ALD Connect Annual Meeting. As soon as we arrived, I saw people I’ve only seen on my computer screen. And, these aren’t just regular people to me. Imagine meeting one of your heroes. Now, imagine meeting a room full of your heroes. THAT’S what it felt like.
People responsible for newborn screening for ALD, for raising funds for research, doctors dedicated to fighting our disease, biotech companies discovering new treatments, and piles of people living with ALD/AMN. And, there were the ALD moms – some have lost their boys, some are caring for them now, even one who has hope for her beautiful son thanks to newborn screening. All these names I’ve known, all these faces I recognized, all their stories that have helped me move forward — it was a little overwhelming, but deeply powerful.
For the first time since we were thrown into the world of Adrenoleukodystrophy, I feel like our family is connected to something bigger. I walked away from the meeting wanting to march on Washington and change legislation, start a foundation to raise money for ALD, go back and get my medical degree . . . I may do a few of those things over time, but I think for now my job is to share. Share what it’s like to live with ALD. Share what it’s like maintaining my family — trying not to be defined by the disease. Share what it’s like to be a normal, special family. So, I will continue to write and to all of my ALD friends and stranger-friends — just let me know when you need me to do some marching or raise some money. I’m guessing no one really thinks it’s a good idea for me to go to medical school;)
Thanksgiving is always a time of reflection. As I consider all the things I am grateful for, I’m adding being part of the ALD community. I hate ALD — I hate what it’s done to Jack, I hate what it’s done to so many families, BUT I do love the people I’ve met through our wicked disease. We can’t fight this monster alone and I am honored that our family is fighting with this group of strong/dedicated/brilliant people.
Please join me in taking a moment today to send a prayer/good vibes/happy thoughts to a woman who adored our kids. Jack and Anna called her MopMop, but most people knew her as Sharon O’Neill. Rest in peace.
Aw, such a nice post. As one ALD stranger friend to another, I hope I get to meet you in person someday. I feel like I already know you and your terrific family. Hugs to you always!!!
I hope we do get a chance to meet in person. I am working on a way to make all us ALD stranger-friends a little closer. I will keep you posted! Hugs and licks to you – the licks are from Jack (that’s his thing)!!!
ALD brought me sadness when it took away both my beloved cousin and my dear brother at a very young age and these memories was so bad. I am also a carrier. When I know I have a mutation in my gene, what comes to me is that what should I do to raise awareness to public about ALD because we have known nothing about it in Vietnam. Some families have affected sons but they hide a real stories (we used to do it). Then I keep searching and searching. I find strangers friends whom have common concern, it is ALD.
It’s true that ALD took away many things, many happiness, but I still hope that we could save the boys.
Happy Thanks giving to you and Jake.
Tra My (from Hanoi, Vietnam)
Tra My, Thank you for reaching out to me. ALD is such a wicked disease but the people in the ALD community are strong and we do need to fight the monster together. Raising awareness is the biggest thing we can do. The more people (doctors, teachers, parents) can recognize the disease the better. Early diagnosis is the key to a positive outcome for our boys. Stay strong and thank you for being a stranger-friend to me!!!!
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