a conference, the flu, a fall and a shower

Being surrounded by our ALD community is aways a thrill for me and being asked to stand up in front of many of them at The Aidan Jack Seeger Foundation — Standards of Care annual meeting was an honor. Talking about ALD, Jack and medical marijuana did have me nervous, but it was received well.

The conference takes place every year in Brooklyn and is run by one of my ALD heroes and the founder of The Aidan Jack Seeger Foundation – Elisa Seeger. Her beautiful son, Aidan, lost his battle with ALD and ever since she has fought to change the face of the disease. Her crusade to add ALD to the newborn screening panel has led to 14 states testing for the disease — 54% of births in this country (and that number is going up every year). She has also helped develop a wonderful guide for the parents who have just received the diagnosis. And, I don’t know anyone in the ALD community who doesn’t know Elisa and describe her as not just a driving force, but the sweetest, most generous human on the planet. 

The foundation fills the annual meeting with top doctors in the field, doctors trying to better educate themselves on ALD, biotech companies working on treatments, and patients and parents. I’ve attended for three years and am always impressed by the assortment of speakers representing all the sides of our disease.

When Elisa asked me to speak, I jumped at the opportunity, but sharing Jack’s cannabis story with this group did have me feeling a little uncomfortable. Cannabis is still largely unregulated and under-researched. I’m not a doctor or a medical professional and I didn’t want anyone to walk away thinking that cannabis was now part of some sort of standard of care for people with ALD. I kept reminding everyone that I was just a mom who loves her son and is trying to provide him the best quality of life possible. 

I went on to say that I’ve not seen a single negative side-effect since introducing medical marijuana into Jack’s regimen four years ago. It’s not effected his other medications or made him unable to complete his normal daily schedule. I credit cannabis for improvement in Jack’s walking, sleeping, eating and focus. It may not help anyone else with the disease, but it’s worked for us. A reminder that sometimes thinking “out of the box” is a good move for those of us facing rare/complicated/crazy issues. I’m sure that my words weren’t quite so clear as I stood in front of the crowd, but this is what I planned to say and I think I got my point across.

Since I spoke, two people have reached out to me and wanted more information about our experience. Family’s with boys, like Jack, dealing with complicated, often uncomfortable, lives.  I’m so happy that Elisa trusted me enough to share our story and I promise I will be responsible — anyone who reaches out to me will get the same disclosure, “I am not a doctor or medical professional. I’m just a mom trying to provide the best quality of life for my son.”

It was a great conference, but as soon as I walked in our front door Friday, I was reminded that life goes on and it isn’t always just about ALD.

Proof that life with ALD is not always just about ALD — The Flu:

Our family had planned to attend the second half of the Aidan Jack Seeger Foundation events — a family retreat. Unfortunately, we weren’t able to join the fun. I found out Friday that Jack’s school has had a flu outbreak. Between Jack’s less-then-perfect reaction to the prophylactic Tamiflu we decided to give him and worrying about getting other kids sick – we didn’t go the the family retreat. We were all bummed to miss meeting some of Jack’s ALD brothers, but the good news is that Jack seems to have avoided the flu for now. We are keeping our fingers crossed and please send love/prayers/good vibes to all of his classmates that are fighting the flu.

More proof that life with ALD is not always just about ALD — A Fall:

Instead of the ALD Family Retreat, we had a quiet Saturday. We stayed in our PJs until noon and waited for the snow to arrive. After lunch, snow started to fall and I decided to take the dogs for a walk. As the dogs and I were heading home, I was chatting with my friend Kim on the phone, looking forward to getting out of the cold. I crossed the street and stepped up onto the curb when suddenly I fell. I’m not entirely sure how it happened, but I was on the street, my left wrist was aching and I was awkwardly pushed against the front of a large, black SUV. Kim heard me screaming that I had fallen and couldn’t get up. She was trying to calm me down, when the car I was leaning against started.

I’ve had my share of horrific experiences, but this was defiantly in the top five. Luckily, Dan came to the rescue within a couple of minutes. I’m fine except for a sore wrist and a new fear of ice and remote car starters (once Dan got me off the ground, we realized that the car was empty and I was in no real danger).  

A little more proof that life with ALD isn’t always about ALD – A Shower: 

Sunday morning I wrapped up my achy wrist and headed into the City. My mother and I threw my sister-in-law a baby shower. It was a lovely party, but better still is that in a couple of weeks, we will have a new baby in the family!!! And, this baby will be born in NY, where ALD happens to be on the newborn screening panel thanks to the Aidan Jack Seeger Foundation.*

It’s been a long four days. I’m ready for some time in front of the fire and some good/bad TV. Hope you all are doing some of the same today!

Love, Jess

* The baby is NOT in danger of having ALD. My brother doesn’t have the mutation and, even if he did, he could not pass the gene to a son. We are just happy that NY State is doing the right thing for all of it’s babies. 💙

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