During Sunsets for Kate, I have invited others to share a sunset story. This post is from a parent of a child with Usher syndrome.
Brian Haerr from St Louis, USA
Where was the sunrise taken?
St Louis, USA.
What is your connection to Usher syndrome?
My daughter was born with bilateral hearing loss and as she grew older, some professionals at her school suggested getting a genetics test to rule out certain possibilities of the hearing loss. When the results came back, which seemed to be an eternity, she was diagnosed with Usher 2a. She is five now so for me, it seems to be a ‘wait for something to happen’ mentality as how to deal with any issues she will face.
What does seeing the response to Sunsets for Kate mean to you?
I see the influx of pictures being shown on Facebook and then the news interview posted online as well, and it gives me hope. Hope that this really started something that gets the right funding and gets the right people working on the cure.
Hope that maybe I won’t even have to explain to my daughter that one day she could lose her sight.
Hope that maybe she won’t be collecting sunsets (or whatever she loves when she’s older) from across the world because she will have the ability to see them for herself.
Since Sunsets for Kate has started, there isn’t an evening that goes by when I haven’t thought of posting a picture of a sunset from the States, but it’s winter here and it just hasn’t been the best weather.
But on those mornings when I’ve seen the sun poking up over the horizon and shining through my kitchen window, I think to myself, “That must have been such a beautiful Sunset for Kate last night. Thanks.”
And finally, you and I have not yet met. If we could meet and share a sunset drink anywhere in the world, where would that be? Wish as if anything is possible.
You never know, a sunset fairy may just grant us this sunset wish!
I’d be fine with sitting down just about anywhere to chat over some tea, but you would have to meet my daughter and she’s not one to sit still for too long. I would then say on her behalf, her most favorite place in the whole world (so far) is Disney World. She’s been a couple of times and it never seems to lose it’s magic.
Disney World sounds magical. I’m in. And hang onto that hope, Brian. Don’t give up that hope.
Thank you to Brian for being open and honest with me always, and giving me insight into what it is like to be a parent of a child with Usher syndrome. You are one of my favourite Twitter friends and I love how you are always looking out for me and sharing my words (and tears).
It was Brian who sent me a tweet that uplifted me the other day when I was feeling tired, overwhelmed and a little lost. He made me see what is possible with Sunsets for Kate, and gave a much needed gentle nudge to focus on where I want this to go, what I want this to do, which is obvious. I share Brian’s hopes.
Brian can be found on
Did you see the previous posts in this series?
GUEST SUNSET #03 – GABRIELLE TOZER