Wednesday, July 30, 2014

14-year-old boy is losing his sight but sees a community there to help

By Emiley Morgan and Sandra Yi, Deseret News

Published: Sat, March 8 10:15 p.m. MST

 Brenden Sorensen, 14, who has been diagnosed with Usher Syndrome and is expected to lose his vision, talks with attendees at a fundraiser for him in Midvale on Saturday, March 8, 2014.

Brenden Sorensen, 14, who has been diagnosed with Usher Syndrome and is expected to lose his vision, talks with attendees at a fundraiser for him in Midvale on Saturday, March 8, 2014.

(Ray Boone, KSL-TV)

MIDVALE — When Brenden Sorensen was diagnosed with Usher Syndrome and learned he would likely lose his sight, he asked whether he would be able to drive.

His father, Kipp Sorensen, and stepmother, Aja Kayser, both recall telling him that, no, he will never drive. Both also marveled at his response: "OK, then I'll take the bus."

"We were like, 'Really?' It was very emotional for us," Kayser said. "I think all of us involved were crying and feeling so sad for him and he kind of decided: 'I'm going to make this work.'"

Brenden, 14, was diagnosed with the disease eight months ago. Kayser said they have been told that every case is different, but that Brenden will likely lose his vision within the next year.

One doctor gave him a little more time, another to the end of the summer.

"Every case is completely different and we're hopeful that he doesn't lose it all and ends up with tunnel vision or something — something besides completely blind," Kayser said. "But we don't know so we're like, we got to do what we can do now."

The family put together an event Saturday at the Hawaiian Cultural Center in Midvale to raise money for trips to the places Brenden would like to see around the world. A dinner featuring foods from the various nations was provided and included Greek, Italian and Chinese fare.

Kipp Sorensen said the diagnosis left him feeling helpless, especially given the uncertainty with the timing and severity of what Brenden will experience with the disease.

"What's frustrating about it is there's nothing you can do about it," Sorensen said. "You get bad news like that and usually your reaction is, 'What are we going to do to fix this?' and there isn't anything except accept it."

He said Brenden is learning Braille and how to use a cane. There are plans for Brenden, who lives in Arizona with his mother, to attend a camp for the deaf and blind there, as he is also hearing impaired. But Kayser and Sorensen felt strongly that it was important for Brenden to see more of the world while he could.

He went to Japan and Thailand with his father and the Caribbean with his mother last year. Kayser said they helped him pick other potential places based on his interests.

"It really kind of stemmed from my husband and I because we've been lucky, we've been able to travel a lot and we've seen all these beautiful marvelous things and people and places you know nature and architecture and we thought we don't want him to miss out on that," she said.

"It's too incredible of a thing." She said they hope to do humanitarian work in Africa and that traveling will change Brenden's perspective to see that there are all kinds of people out there with their own challenges. Still, Sorensen said he is amazed by how well his son has handled everything.

"He's always about thinking how am I going to deal with this, then he accepts it and is like, 'OK,'" Sorensen said. "His personality is that way … His personality is just — he's a saint. Always honest, always truthful, always kind, kind-hearted. He doesn't complain, just a way sweet kid."

Ernesto Lorusso, owner of Terra Mia in Orem, said he knows Brenden and Kayser and wanted to take part once he heard about Brenden's diagnosis. He said they try to often participate in community fundraisers, but that this was a little different.

"This for some reason really hit home," he said. "It's a young kid and what he has to face… it's just unbelievable to me." He said he is glad Brenden wants to see Italy. Lorusso said it's a country of warm people and fantastic food.

"Brenden is going to be experiencing Italy with all his senses, the smells, the colors, everything is different," Lorusso said. "Life is a gift and it has to be considered such. The fact that he's going to lose one of his senses doesn't have to impede him from enjoying life to its fullest, so I hope he will learn that."

No matter how much money is raised or how much of the world he sees, Sorensen said the event Saturday was valuable.

"Initially, our intent was really to raise money for travel. My hope, actually, tonight is that Brenden just really comprehends how much people love him and how much people are here to support him," Sorensen said.

"In the grand scheme of things, knowing that is more valuable than going on any trip and we hope by the end of the night that he really comprehends how much he is really loved."

Email: emorgan@deseretnews.com, Twitter: DNewsCrimeTeam

Recommended
1. I know it. I Live it. I Love it.
Provo, UT,
March 9, 2014

"What's frustrating about it is there's nothing you can do about it," Sorensen said. "You get bad news like that and usually your reaction is, 'What are we going to do to fix this?' and there isn't anything except accept it."

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In rare circumstances like this I usually think the only thing you can do is pray, adjust, and remember to move forward and embrace everything good you have.

It seems they have a fairly similar outlook and are acting on it. Awesome!

2. DEW Cougars
Sandy, UT,
March 10, 2014

To Brenden Sorensen and parents

I have Usher Syndrome type II. I am in the 50's and can still see and hear a little bit. Over time I continue to lose my visual field little bit a time. I was diagnosed with this condition at your age and can't see very well at night but I am able to get around no problem. Now my visual field are about 5 degrees and I can get aruond with or without the cane. I was told by many doctors that people with Usher may not go completely blind ever. I hope that is true.

3. im4kids
AUSTIN, TX,
March 10, 2014

I have a lot of connections to the Deaf and DeafBlind community in Austin, but no longer in Salt Lake/Midvale. There are strong communities all over (Arizona, Utah, etc.) Please find this community and immerse yourself in their positive outlook - seems like you will fit right in! You will have struggles, but with your family support and your positive nature, this will be a great way for you to help others and show others how to look on the bright side! My prayers are with you and your family as you navigate your way through this new challenge.

4. DEW Cougars
Sandy, UT,
March 10, 2014

Continue

Did you know their are three types of Ushers. Look at Fighting Foundation Blindness for better insight. I don't drive too but I can get around fine. Talk to people at Blind Center which they too have good resource for Usher. And, you can go to college which I recommend looking into Gallaudet University at Washington DC. I went to BYU instead but I didn't know about Gallaudet which I heard is a good program.

Enjoy your trips around the world and don't give up hope on your sights & hearings. Who knows, Gene Therapy will come soon which it is in the work on mice or something.