Mymom and I were recently interviewed by friends and fellow ALD folks, Ken and Christie, for ALD No Limits, and I can confirm: speaking about ALD feels great, but it’s a little distracting when the whole time you’re wondering, “Is it strange that my mother and I have the same haircut?”
But in all seriousness, what Ken and Christie are doing by sharing these stories is incredible.
ALD is complicated. It is medical and emotional and genetic and generational and can be different for every person/family. For our family it is motherhood and frustration and pain and fear and celebration and advocacy all wrapped into one long story. And getting to sit beside Mymom — we are two women connected by more than just DNA — and talk about what this journey felt powerful.
It felt honest.
It felt a little vulnerable.
It felt like we were connecting with community.
I know most of you many know our story, but if you’ve ever wondered what living with ALD looks like across generations… if you’ve ever wanted to understand the human side of this diagnosis… if you’ve ever needed proof that you can carry something heavy and still laugh — I hope you’ll watch.
You will see:
- A mother and daughter trying not to talk over each other.
- A mother and daughter who share a haircut and ALD and a love for JackO.
- A few earnest moments.
- A lot of heart.
- At least one facial expression I didn’t rehearse.
Most importantly, you’ll see why sharing your story is important.
Community is not optional in rare disease. It is survival. It is education. It is connection. It is the life vest when the waters feel rough. Thank you Ken and Christie for creating this incredible platform and for inviting Mymom and I to participate!
If the video moves you — even a little — please consider supporting ALD Connect. Your donation funds necessary research, helps families find answers, find each other, and find steadier ground.
Watch. Share. Donate.
And maybe forgive my camera face. 😉
Love,
Jess
smiles and duct tape 
This is wonderful Tatess!
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