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Adventurers Jim & Tori Baird on their son’s FOXG1 diagnosis, life in the wild | National Geographic


3m read
·Nov 10, 2024

Wesley, as challenging as some of our days might be with him, I wouldn't want to change him for the world because he is just the happiest little thing.

My name is Jim Baird and I am Tori Baird. We have two boys, Wesley and Hudson. Wesley is just a little light for us. Wesley's non-verbal, but yet he finds a way to say so much, just with his expressions and his million-dollar smile.

We noticed around four months, Wesley wasn't tracking with his eyes. He's not reaching for toys the way he typically should be. He's still not walking or crawling or making really good eye contact. So we're kind of coming to our own conclusion that obviously something's going on here. We just felt like all this kind of joy and the idea of how things were gonna be as new parents and all the hopes and dreams we saw for our kid were replaced with concern and worry and fear.

Our genetics counselor, I remember her saying, the bloodwork came back and Wesley has a syndrome called FoxG1, and she's like, “How do you feel?” And I remember thinking, I don't know what FoxG1 is. I have no idea what you're saying to me. And she kind of went through her paperwork and explained it to us. FoxG1 Syndrome is a monogenic neurodevelopmental disorder. It is caused by the mutation of the FoxG1 gene. FoxG1 gene is actually one of the first and most critical genes in early brain development.

I could feel my heart being ripped out of my chest at this point, and I just remember sitting there with Wesley on my lap and holding him tighter and tighter. They give you this life-changing news that they don't have very much information about. They don't know what it could mean long-term for Wesley, what his life is gonna look like.

Jim was driving and we had to pull over at one point and just, like, cry, and we're googling FoxG1. And I remember reading what the symptoms are. One of them was uncontrollable laughter. Wesley started laughing in the back seat, while Jim and I are, like, horribly devastated. And I remember thinking, maybe it's gonna be okay. Maybe this isn't so bad if one of his symptoms is laughing, you know?

Me and Tori just stood up straight and looked at each other and just basically said that it was gonna be business as usual. I just looked at him and I told him that he was going to be my best bud no matter what.

It's not a super huge community of people that have been diagnosed with FoxG1 because it is still fairly new as far as syndromes go, but there's likely more people out there who have not been diagnosed. We have a little Facebook group of caregivers of those with FoxG1, so we reach out to each other and ask, “Do you deal with this? How do you deal with that?” And it's also just nice to know that there are other people out there who know what we're going through, and it gives us hope.

One of the things that makes Wesley the happiest is when he hears all the birds chirping, and he just has a big smile on his face. We're lucky enough to have those outdoor skills and knowledge. Being in nature is good for anyone, but it's especially good for Wesley. Wesley became more aware of his surroundings, and that came with being outdoors.

There's no cure for FoxG1 Syndrome. You could sink into a really sad state. When you get into that state, you're unable to find the energy to care for your child who has disabilities. You're unable to take care of yourself. It's gonna have its challenges, but at the end of the day, you're gonna love them anyways, and they're gonna teach you so much.

Every time you fall down into these negative thoughts, you have to replace them with positive thoughts. I have confidence that Wesley is gonna progress and there might be more treatments that could help Wesley, that his brother’s gonna be there to help him, and essentially they're gonna lead fulfilled lives and do good for the world.

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