Jackson was 7 months old when he was diagnosed with Usher syndrome type 1B. At a point where we just started to accept his deafness, this was the one thing we did not see coming. Our son would go blind? We were devastated. But we had such a happy baby boy, we needed to be strong for him. If he was willing to deal with this head on, then so should we. And that’s how we choose to live our lives. Jackson has shown us that Usher syndrome is not game-over, it’s a game-changer. Despite his vestibular problems, he is walking and running.
He loves the outdoors, animals and is doing really well in school. Although Jackson is progressing well, we worry about his vision every minute of every day: when and how will his vision start to be affected, is it affected now, how bad? It’s a like a looming dark cloud that never goes away. We do our best to raise awareness and raise money in order to find a cure. We are hopeful, but it’s a race against time. Please join us in our fight to save sight now. For Jackson, for Lia, for Bruna and for all others around the world living with Usher1B.

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