Hear See Hope partners with Usher Syndrome Coalition

Hear See Hope is proud to announce a new partnership with the Usher Syndrome Coalition. The Usher Syndrome Coalition is connecting the global Usher syndrome community. Its mission is to raise awareness and accelerate research for Usher syndrome, the most common genetic cause of combined deafness and blindness. The USC also provides information and support to individuals and families affected by Usher syndrome.

By fostering lasting partnerships with the growing number of
Usher syndrome-focused organizations like Hear See Hope around the world, the USC facilitates collaborative efforts, seeks to minimize duplication of efforts and create a global network of support. Hear See Hope is grateful to the USC and all our supporters who work to find a cure for Usher.

Walking the Camino de Santiago for Usher Syndrome Research

Peter and Maggie DevlinWalking on the Camino de Santiago is a spiritual journey.  But for my wife and I, our pilgrimage will have the added dimension of Walking for a Cure. We will be walking for a cure to Usher Syndrome. Every step we take on this journey will help us march forward toward a cure of the most common cause of deaf/blindness!  On June 8, Maggie and I will trek across parts of the ancient Roman trade road, at one time called the “Milky Way”, from St. Jean de Pied, France, to Santiago de Compostella, Spain. We are embarking on the physically demanding journey as a fundraiser for a cure for Usher Syndrome. All of your generous donations will go only toward The Hear See Hope Foundation, an organization that is dedicated to raising and giving out funds to research institutions so that the cure for Usher Syndrome could be found. By the time we conclude the trek and fundraising on June 19, we will have walked nearly 200 km!

For a little bit about ourselves. Maggie and I have been married 30 years. We have four children who are now adults. Maggie is a special education teacher and I’m a now retired software developer.  I was born deaf with profound sensorial hearing loss and adolescent-onset blindness caused by retinitis pigmentosa. I have Usher Syndrome.

Having Usher Syndrome is a lifelong disability that changes our body over time. I entered the world in silence, others experience the isolation more slowly, but we all struggle with hearing loss throughout childhood. Upon reaching adolescence we gradually lose our precious vision. Our peripheral vision becomes gradually more and more narrow, diminishing to only a few degrees. We see you and the rest of the world through a keyhole. We often stumble into people and things. Others are often perplexed and annoyed, because it seems we could see, so they ask why are we bumping into them? We fear darkness. When we step outside, nothing seems to be there except for a hand to hold, or a flashlight to guide our way. We fall more often than not. Staying balanced and walking a straight line pushes our vestibular system to the limits. The hardest part about all of this is losing our ability to communicate with you, our loved ones, and the world around us. Usher Syndrome affects so many!

With that being said, we begin the trek with the hope that our journey is yours also, and that it will make you that much more aware about Usher Syndrome. When you make the tax deductible donation, you are spiritually walking with us. Please follow our blog at https://thedevlins.wordpress.com to “walk each step with us”.  With your help, we hope to make a big difference toward helping to find the cure to Usher Syndrome.

As Helen Keller said, “Walking with a friend in the dark is better than walking alone in the light.” Won’t you help us Walk for a Cure to Ushers? Won’t you help us Walk for See Hear Hope?

See the Cure! Hear the Cure! Hope for the Cure!

Donate
Buen Camino!

Peter & Maggie

conner dalton walking

Learning to Live with Usher Syndrome

Connor and Dalton McKittrick are two brothers who are helping each other and learning to live with Usher syndrome.

Lauren's Quest

Lauren’s Quest

This is a story of Lauren and how she helps her friend Conner in the fight against Usher Syndrome.

Canadian Speed Skater Kevin Frost

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At Hear See Hope, we love to see extraordinary stories about those living with Usher’s syndrome. Meet Canadian speed skater Kevin Frost, who is one of those stories! Kevin has Olympic ambitions and there are only two things in his way — Usher Syndrome and the International Paralympic Committee’s failure to recognize deafblind speed skating as a sport. Kevin’s passion for the speed skating and his drive to succeed have rallied his community around him in support of his bid to get deafblind speed skating recognized as a Paralympic sport and to be one of the first to compete. Watch this video about him, and his efforts to live not just an ordinary life, but an extraordinary one! Visit his website at www.deafblindspeedskater.com for more about Kevin today!

Family Affected by Usher Syndrome

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The McKittrick family has not one, but two children that are affected by Usher syndrome. Watch this touching story of Dalton, the McKittricks youngest son, as he undergoes surgery to have his cochlear implants put in and gets to hear his parents voice for the first time.

Lauren's Quest

Lauren Shoemaker

Lauren Shoemaker is an inspiration. She is one of Hear See Hope’s most committed supporters, and she’s only 12. Not only has Lauren been a great friend to our children and our entire family but she done so much to increase awareness of Usher Syndrome. Lauren is a very special person and we are so lucky to have her in our lives.

Starting with our auction in 2006 and each year thereafter, Lauren has done something that I admire her courage for. At the age of just 6, not only did she get up onstage alone in front of more than 200 people to sing karaoke at our auction but raised $1,000 in sponsorship money herself to sing that night. She’s done the same thing at every annual auction since. Her performances have been so inspiring to those attending that many others match her sponsorship donations each year. For several years Lauren also has asked for donations to Hear See Hope in lieu of birthday and Christmas gifts.

What’s most special about Lauren is her ability to help increase awareness. She’s always been there for our boys along the way. She’s proud to be their friend and has helped support Conner and Dalton when they needed help along the way. She’s selflessly helped the kids when they needed help seeing at night, had problems walking on the beach at a school field trip, tried to play sports in PE when the odds are stacked against them and been there to support them with a smile and a hug.   There are too many examples to list. At 4, Dalton thinks “My Lauren” is the best, probably because no matter what she’s doing, she stops to give him a big hug.

Thank you Lauren for all that you do for Hear See Hope and our family. You inspire us.

– Lane McKittrick

Introduction to Hear See Hope 2005

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Conner’s family found out he was deaf at a very early age and were able to take steps to help their son through this difficult process. Through an early cochlear implant Conner was able to hear sounds that he would not have been able to hear. Conner was diagnosed with Usher syndrome in 2004. His parents founded the Hear See Hope foundation to raise money for research to find a cure and to give support and hope to families impacted by Usher syndrome.

The Dunning Story

Bella was born profoundly deaf, which was an extremely difficult experience. We were fortunate to have access to some of the best and most caring professionals in the world in the Boston area.  Bella began signing at 8 months of age, earlier than most children speak, and after receiving cochlear implants, slowly transitioned to spoken English.  She was soon in a mainstream school maintaining grades on a par with her peers and a reputation as one of the more popular kids in class.

But my wife and I sensed that something else was wrong. Bella had severe balance problems. Even at seven years of age she still couldn’t negotiate a balance beam while her four year old brother could do so with ease. She tripped over things all the time, obvious things, like our poor yellow labrador retriever. One weekend we went camping and Bella was terrified to walk to the outhouse in the dark, even with the aid of a flashlight. She clung to me like plastic wrap as we wound our way down the path.

A few months later it all made sense. Bella had Usher syndrome. Usher was the cause of her deafness and her balance problems. It was also threatening to take her vision. At eight years old, Bella was effectively night blind, requiring 100x more light to see an object than the rest of her family. My wife and I were devastated.

But the truth is that it has only gotten better from there. Bella continues to thrive in school. She rides horses and dances and next year she plans on joining the school chorus. Not bad for a deaf kid with poor balance. Two years since diagnosis her vision has shown no further deterioration, though we fully expect that it will change for the worse over time.

Bella needs supports to succeed. The school provides an aid in the classroom. The aid is there mainly for Bella but helps all the kids in class. Bella uses an FM to assist her in the classroom. Without it, she struggles to hear. She has physical therapy a couple of times a week to improve her strength and offset her balance issues. Her vision is not yet a problem in class, but the school is making arrangements to help her mobility, such as adding bright tape to the edges of stairs to help them stand out. We encourage Bella to carry a small flashlight with her and she has a good friend in class that walks with her during firedrills since in a real fire her lack of night vision might be problematic. In the evenings we often have to hold Bella’s hand in parking lots or when we first enter the house to guide her past obstacles.

This might sound overwhelming and complicated, but it was all done incrementally. We adjusted as problems arose, adding a new procedure or intervention when it became necessary, one at a time. For Bella, it’s just her way of life. She finds none of it odd and few of the other children in school do either.  In fact, Usher syndrome has made her more of a celebrity than an oddity. Perhaps it is just her personality, but Bella seems to see her physical problems as a challenge rather than an inconvenience. Arriving earlier, asking more questions, and working harder is simply the way she lives. She knows nothing else. In short, Bella leads a happy life with few limitations at the moment, so that’s where we focus. Tomorrow is always uncertain, especially with Usher syndrome, but for today life is good.

The McKittrick Story

When Conner was 10 months old we found out he was profoundly deaf. At 13 months of age, he received a cochlear implant and because of this, he was able to attend a mainstream school and lives a life with little impairment. His speech and language is still delayed but within normal limits. As his eyesight degenerates, he has trouble with dark areas, but his sense of humor and supportive family help him to overcome the challenges he meets each day. Now, with the birth of our fourth son Dalton who was born with profound deafness, we are undergoing the process for cochlear implants once again. We work harder than ever to support research to find a cure for our sons and all of those with hearing and vision related disorders.

The Rush Story

Hello. It was nice coming upon your web site. I myself have Ushers and so does my sister. I was born with hearing loss. I remember being fitted with hearing aids. I used to say to myself that I am blessed to have my eyes. Little did I know why I was going to Children’s Hospital of Boston. I never could understand why they were looking at my eyes also. I would say, “I am hear for my ears.” (lol.) By age 6, I started having trouble seeing at nighttime. By the time I was in my late 20’s to early 30’s, I started to lose some of my field vision. I could no longer play sports. I couldn’t see up close. I was using my central vision and peripheral. I had to move my eyes back and forth, sort of like scanning, and then used my thought process to fill in the missing blind spots. Of course, this is very stressful and takes a lot of energy from me. I am constantly bumping into co workers all the time. They now stop walking completely when I am approaching nearby. They get my attention by saying “Hi Mark” so I am able to spot their location and slowly maneuver around them.

I am 49 years young and I have been waiting all my life to be helped or cured. I tell people that I am not handicapped, I am challenged. My beautiful wife and I just had a baby girl 13 months ago. I WANT TO SEE and HEAR HER GROW UP. I hope my story helps others realize how hard it is for people like us with Usher syndrome and that my message reaches others who can help our cause. I don’t want to give up hope.

Sincerely,
Mark Rush