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