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Otteroo is “Magical” for Toddler with Rare Genetic Disease

An extremely rare genetic disease called FOXG1 syndrome caused Orion, 3 years old, to be born with cerebral palsy. Orion is unable to sit up, crawl, walk or talk, but in the Otteroo, there is nothing stopping him.

After his mom, Kate Lane, wrote to us saying, “Thank you for creating this amazing product,” we wanted to know more.

He’s three years old, but he’s still almost like a four month old baby. He can’t really roll yet. So, the pure joy that you have of your kid reaching a milestone, you can’t put it into words. That surprise, happiness.

I’m not familiar with FOXG1 Syndrome. Can you tell me more about it?

It’s a super rare disease; there are currently around 800 children diagnosed with it in the world. FOXG1 is the first neurological gene to form after conception and for Orion’s specific mutation, a single error of an extra nucleotide early in his gene caused detrimental damage to how his brain developed.

How did this impact Orion’s development?

Orion is unable to sit up, crawl, walk or talk and eats through a continuous feeding pump through his G-Tube. He has hypotonia, which are jerking movement patterns. Fortunately, has been seizure free, unlike many others with his condition. He is 20 lbs and has microcephaly so he still looks like a baby.

What else can you tell us about FOXG1?

While there are a lot of problems with kids with FOXG1, a positive thing is they are mostly overall happy kids. And, they all have these two things in common: they love music and water. Over the past three years, we’ve tried out so many different devices. We’ve tried infant bathtubs, but now he’s too long for them. We’ve tried special needs bath chairs, but he just sits in place. Six months ago, we just decided to go for it and order one of your tubes because they are super affordable.

How did it go?

It was magic to see him, because he’s typically immobile. To see him actually moving in the water, and how happy he was, it just made bathtime so much fun! He looked like a little squid swimming around and it gave him exercise. My only regret is that I didn’t get one sooner.

How did you react the first time you saw him in it?

I was just very happy and smiley, saying, “Oh my gosh.” Just to see him moving, it’s magical. I got to experience the joy of having my first child who was born without any complications reach her milestones, but I haven’t got to experience that with Orion.

He’s three years old, but he’s still almost like a four month old baby. He can’t really roll yet. So, the pure joy that you have of your kid reaching a milestone, you can’t put it into words. That surprise, happiness.

For him to move, it’s really important neurologically. Because he has developmental issues, it’s so important for his brain to learn he can move his body. That makes brain connections which helps him cognitively. It also helps him understand more words.

How does he move in it?

His arms and his legs just adapt, it’s so cute. It’s not super deep, so he can push off from the bottom. He can push off from the side. For him to move, it’s really important neurologically. Because he has developmental issues, it’s so important for his brain to learn he can move his body. That makes brain connections which helps him cognitively. It also helps him understand more words.

How does he react when he sees you getting out the Otteroo?

He knows. He almost … he can’t physically help me, but he almost appears to stay still, knowing that instead of doing his jerking movements, he knows staying still will get him in the water sooner.

But for him to be in a pool and exercising, it’s not just good for his muscles, it’s good for his entire digestive system, his spirits and happiness. Just listening to myself saying this out aloud is motivating me to get him in the bath every day.

After six months of use, have you noticed any changes in him?

Definitely, once he started swimming, he started eating more and he gained weight. Literally, he gained more weight, at a faster rate than he’s gained in his entire life, as soon as we got this, and I know it was because he was exercising more.

Wow! Anything else?

He used to have really slow motility; his food goes through his G-Tube very slowly, his stomach empties slowly, his gut empties slowly because he’s not burning calories. He had been just lying there, bedbound. But for him to be in a pool and exercising, it’s not just good for his muscles, it’s good for his entire digestive system, his spirits and happiness. Just listening to myself saying  this out aloud is motivating me to get him in the bath every day.

To learn more about FOXG1 and how you can help, visit this website

Julie Forbes