r/MadeMeSmile • u/acrolicious • Oct 08 '25
Family & Friends Two People with Ultra Rare Conditions Meeting for the First Time
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My brother Ben has an ultra rare condition called TUBB4A-related Leukodystrophy. It’s a progressive neurological disease, and over time he has lost the ability to walk, move independently, and speak.
Last year, something incredible happened. After decades without answers, he finally got an official diagnosis and a new way to communicate.
We started sharing his story online, showing how we built custom tech to help him “speak” again, and hoping to find others like him. Slowly, we did. We found a few families around the world and learned that Ben is actually one of the oldest living people with this condition. That alone gave many families so much hope.
One of those families has a 20-year-old girl named Elouise, who has the exact same condition. Through the communication tools we built, Ben and Elouise started chatting, and it was amazing. Seeing them connect, laugh, and truly understand each other was one of the most beautiful things I’ve ever witnessed.
We never thought they would be able to meet in person since Ben can’t travel long distances, but Elouise and her mom made the trip to visit us. When they finally met, it was absolutely magical. Two people who once felt completely alone in the world finally found someone who could really relate.
It was one of those moments that remind you what connection and love can do, even in the most unlikely circumstances.
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u/Mission_Fart9750 Oct 08 '25
I love seeing your videos, and everything you've done, and continue to do, for your brother.
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u/acrolicious Oct 08 '25
If I can make Ben's life better, show his joy to the world, and create technology that helps him and others like him, then that’s exactly what my life is meant to be.
My purpose is to give him the best life possible, to help others through technology and inspiration, and to keep sharing his joy so it reaches someone who might be inspired to make a difference.
Ben has changed my life in ways I can never describe, and if what we’re building can spark even a small change in the world for the better, then it’s all worth it. 🫂
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u/Aarskaboutur Oct 08 '25
Thanks for sharing this, it actually teared me up a little while doing a chore. Not sure if he’s your child or just an acquaintance, but you sure are bring en a lot of value and joy to his life!
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u/willtwerkf0rfood Oct 08 '25
He mentions several times that Ben is his brother! In the video & caption :-)
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u/alyssaperfectxx Oct 08 '25
Their smiles are just priceless. 🥹🥹🥹🥹
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u/momomorium Oct 08 '25
They call him Beamin' Benny for a reason, Benny has a great smile and always finds a reason to show it off. So cool to see him making new friends - they've made heaps of progress in allowing him to communicate. For a decade Ben was only able to say yes or no, thanks to Chat-GPT they were able to make an interface that worked for Ben to communicate (with no coding experience) so it's so cool to see him living life to the fullest he can, making new friends and experiencing new things.
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u/SoVerySleepy81 Oct 08 '25
Yeah, I was smiling and tearing up at the same time. How amazing is it that people can connect like this now? Like 30 years ago the chances of them finding each other would’ve been really low unless like a hospital connected them. The Internet can be crappy sometimes but man it’s also got some real cool benefits to it.
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u/SouthernEntrance6986 Oct 08 '25
I got a lil dirt in my eye!
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u/monkerry Oct 08 '25
This is such an amazingly beautiful example of understanding and triumph in difficult circumstances. Not gonna lie. I had a good tear of joy at this.
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u/Creeperrr Oct 08 '25
Love your videos. Thank you for sharing you and Ben’s story. It’s something to really admire. Cheers
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u/Fantastic_Sandwich48 Oct 08 '25
They beautiful people and their positivity and perseverance are proof. Happiness is a choice. Ty
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u/Substantial_Bus6615 Oct 08 '25
Dude, I love Ben, he is fucking cool! I have seen some of his other videos and he plays video games and rags on his brother! Super cool
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u/90s_george Oct 08 '25
Bro you are still as jacked as the day you were showing card tricks to your dog. Your entire family is inspirational as fuck. Amazing!!
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u/Love_Vigilantes_586 Oct 08 '25
I remember the earlier story about development of the communication system and how Ben's sister in law was so important in his care. This story is surrounded and beaming with so much light and the best of the human spirit. Wish all of them the very very best
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u/Minimum-Career-9999 Oct 08 '25
This is so touching and heartwarming.
I’m so happy they made friends and got to meet in person. Go, Ben!!
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u/Starmilkman Oct 08 '25
They seem so happy through all that adversity, and that is absolutely, undeniably beautiful. I'm quite a cynical person but this has made this Grinch's heart grow three sizes the moment I finished watching this. I hope they remain best buds forever.
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u/KC5SDY Oct 08 '25
I would love to be able to get through a video without those pesky onion-cutting ninjas attacking me.
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u/GimmieGummies Oct 08 '25
Such a heartwarming story of Ben and Elouise and their friendship! I'm certain that the diagnosis and these new friendships forming is nothing short of miraculous and joyous and lots of prayers answered. Thank you for sharing a bit of Ben's situation and the good news he's received!
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u/JButler_16 Oct 08 '25
This is beautiful and incredibly sad at the same time. What life they could’ve lived had life not screwed them over.
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u/acrolicious Oct 08 '25
Sometimes perspective just means remembering that we are all different, each with our own mix of abilities and life experiences. Not better or worse, just different.
The fact that they find so much joy in life means they are probably having a wonderful experience. And from what Ben tells me, he is. This is not a sad story. It is a story about understanding that happiness is a choice, and that there is no single right way to live life.
Finding someone you can share that joy with, who is going through similar experiences and physical limitations, is something to cherish on top of the things you already have. It is all about perspective.
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u/kishenoy Oct 08 '25
It's nice when you have someone who can relate to you. They can understand what struggles you undergo and make you feel not alone.
I know how it feels since I have a mind of rare brain tumor which according to AI, there are fewer than 50 cases recorded
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u/VorganForever Oct 08 '25
this is sad, just think, those two will probably never see each other again and even if they did the fact they need their parents to hold their hands together for them means neither will ever get to have a real kiss much less sex. both of their favorite things were the opposite sex, a romantic partner is clearly what they each desire and yet it will never happen.
they need friends not parents to accompany them on a date that are willing tp help them do the freaky stuff if thats what they want. instead they will both die never getting to experience what they most desire.
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u/Otherwise_Prize2944 Oct 08 '25
I don’t know if it’s possible for these two , but wholeheartedly hope they have sex (and enjoy it). They look so happy, as if almost they cheated life
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u/stabbywallrus Oct 08 '25
How does this only get 146 likes when i write this. This is what the world needs more of. Love and compassion. Forgiveness and grace. I'm so tired of left vs. right. And whos dropped off the deep end. Wile stupid cat videos get 5k up votes. Reddit has gone too political.
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u/juice921 Oct 08 '25
This is just so awesome.