Making Friends with Usher 1C

So a few weeks back, I spoke with a lady name Sonia Desormeaux. She was married to the jockey, Kent Desormeaux, and they are both from the Lafayette area. They have a 13 year old son, Jacob, who was born deaf and as they later found out, has Usher 1c. (same as Hunter). Long story short, a friend of a friend told us about Jacob when Hunter was first born. They told us he had the implants but that they lived in California, if we wanted someone to talk to about it. Of course we had a handful of people here as well, so we took advantage of the less prestigious (but full of wealthy information) people around Louisiana.

Well the day we found out Hunter had Usher 1c, I was on the phone with a mom from Boston who told me about the Desormeauxs. Kent, the father is a famous horse jocket and they are from where we live. Jacob’s mom, Sonia started a foundation called Eye on Jacob. I found more information on www.eyeonjacob.org and sent them an email that weekend. I didn’t hear back right away, but when I was telling my cousin about them, she said they were the same people she told me about a while back, but she had no idea he had Usher 1c. She immediately got their direct contact information for me, and at first I was only able to get ahold of Kent. He said he was not as informed about the foundation as his former wife, Sonia, but that he would give me her information since she was the one running the foundation. I ran by him the idea of having a fundraiser in Lafayette for Usher Research and he was happy to be a part of it, but with his jam packed schedule we agreed to talk about it at a later date. At the end of the conversation he did say that Jacob was one of the happiest kids he has ever met and he just wanted me to keep that in mind. That was very heartwarming for me to hear.

I called Sonia the following day on my way to Baton Rouge for Hunter’s AV therapy appointment, and we spoke for a good 45 minutes. She was unbelievably informational! It’s so nice to be able to speak with someone who is 10+ years ahead of this journey and is actually experiencing the effects of the vision loss (RP). She told me how she has been putting on fundraisers for the past 18 years, so she is obviously a pro. Her main focus since Jacob was diagnosed has been Usher Syndrome. She took 9 weeks to travel all over the country to meet different doctors and focus on what needed to be done for her son. She said that unlike other foundations out there, all of her profits go directly to the University of Iowa to research Usher 1c. There is minimal overhead since she is the only one working for the foundation. My idea right away was to have something in Lafayette. What a better place to raise awareness and funds for Usher 1c research than the place where the gene for 1c is most prevalent? She said her entire family and Kent’s family all still live here. Her sister, who is on the Eye on Jacob board, still works and lives here and has mentioned before having something in Lafayette as well. She currently has a Public Service Announcement airing in California, just to raise awareness of Usher Syndrome, but her goal is to get it nationwide soon! Again, I said I think the first place it needs to be is down here in Louisiana. My goal is to get the word out first and make people aware of what Usher Syndrome is. And the personal stories of Jacob and Hunter need to be shared so that people can get a good understanding of what it entails exactly.

This is not something that will happen right away, but it’s a goal of mine for Hunter. And I think if Sonia and I can team up, we could really spread the word quickly considering we know a lot of the same people down here.

Before we got off the phone, I asked how Jacob was doing and when he started to lose his eyesight. She said at 7 ½ he got out of the car one night and started yelling that he couldn’t see. They thought he was playing a joke, but it was definitely real. He started to lose his night vision at the young age of 7 ½. She said it’s not the age of 10 like everyone says, for 1c it can start a lot younger. He is now 13 and his peripheral vision is slowly started to close in on him. If there are things such as a book sack or shoes on the floor and he does not see them, he will trip over them if he isn’t looking down while he is walking. She said he’s a great kid and an honor roll student. He gets along well with everyone, but don’t try to lend him a helping hand because he doesn’t want it. He’s a fighter and he wants to do it on his own.

Sonia will be at the Usher Coalition Conference in July, and I am very much looking forward to meeting her. As much as I hate the fate of Hunter having Usher Syndrome, I think she and I were meant to get together. She grew up in Youngsville, we live in Youngsville. Their entire family remains in the Lafayette area. This is what I have to do as Hunter’s mom. She did it the minute she found out, and I have a great role model to follow in her footsteps. Now I can’t say I have the funding and resources she has to start an organization like Eye on Jacob, but people will be aware of it, and people will get to know Hunter and his diagnosis first hand. We will not let it bring us down. We’ve got a handful of years to work our tails off towards a cure, and I’m ready to get started! So yes, I am looking forward to the conference on July 7th.