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Deaf-Blind Awareness Week 2020

Of all the obstacles people who are deaf-blind overcome, misconceptions don’t have to be one of them.

Learn more about Deaf-Blind Awareness Week at Helen Keller National Center. Visit HKNC



My name is Meredith Dwyer – or Meri. I’m a 27-year-old woman with CHARGE syndrome. Back in August 2019, I had a retinal detachment in my good eye near the coloboma, so I needed two surgeries to fix that. Shortly after that, I had a cataract and needed surgery. I thought I was never going to see again. Fortunately, I was able to see almost as good as I used to. I can’t read small print books anymore, but I’m enjoying reading on my Kindle. I have other great apps such as Audible, Overdrive, Bard and recently Bookshare’s Read2Go.

I’m currently taking classes via zoom from Helen Keller National Center and my horse work place Pal-O-Mine. I’m also writing a lot of different stories. I’m fixing Anything’s Possible, which is about a sixteen year old girl with CHARGE and Tourettes named Serena Stanger or Rea for short, who has a great destiny. She has to save her home, The Land of Possibility from evil aliens. I’m also working on various short stories and a magical girl story called Final (Exam) Challenge. I’m also working on a novel based on current events called Severed Nation. When the Pandemic is over, I’ll be getting a new computer, phone and iPad. I hope these new tools will improve my reading and writing experience. I am looking forward to continuing my education at Suffolk County Community College.


Although she wasn’t diagnosed until she was 18 years old, Caitlin Caulfield has been living with CHARGE her entire life. She is 32 years old now and lives with her family in San Marcos, Texas, right outside of Austin.

Caitlin has three interveners that work with her and she is able to get out into her community to enjoy the lovely area that she lives in. There are many parks that she loves to go to and people watch, take advantage of a nearby swing or perhaps take in a local musician playing. She is known in her community and enjoys stopping by to say hello and socialize for a while. Sam’s Club and PetSmart are two of her favorite places to go and she loves giving her time at cat rescue in PetSmart socializing the kitties and helping with their care. She also enjoys watching the birds and other animals on display.

Caitlin has such lovely friends here and they take her kayaking on the beautiful San Marcos River or they play their instruments welcoming her to their concert just for her. Her interveners are always looking for other activities to expose her to which has resulted in a love of zip-lining, indoor sky diving, and hiking the local trails that are ADA accessible with them.

She is always on the look out for something new to do but really enjoys her routine full of love, life, and things that give her joy. Caitlin definitely is thriving while living in CHARGE.


 

Hi Everyone!! I am Symone Griffin and I’m 27 years old. I live in Peekskill, NY with my family and my dog Cupcake. I work as a Certified Nursing Assistant at a pediatric long-term care facility. I just finished up my prerequisites to get into nursing school. I was born with magical superpowers also known as CHARGE syndrome. This leaves me visually impaired, speech impaired, a slew of respiratory issues, minor facial paralysis, and some sensory issues.

My impairments aren’t a large boulder in the way of the journey I am intended to be on; however they are things I’ve learned to work around. I’m extremely grateful to live in times where advanced technology can help me do everyday things. I drive myself everywhere I possibly can, with modifications made to my car. I use relay service and FaceTime to speak on the phone. I learned from YouTube how to make my eyebrows match so my face isn’t so “asymmetrical.”

I never would want to wish my CHARGE syndrome away. It’s made me who I am. I have struggled with a lot in 27 years but I am bigger than anything I’ve been through. I’m grateful for everything that came out of having a complex disorder. I hope my story can give a little inspiration not just to parents of children with similar conditions but also to other adults battling struggles such as mine.


Hello, I’m Philip Wismer. I’m a 32 year old Deaf-Blind man with low vision and I was born with CHARGE syndrome. I currently attend Gallaudet University, majoring in Information Technology. I grew up in a small town in Southeast PA called Doylestown. I graduated from high school – Western Pennsylvania School for the Deaf in Pittsburgh – in 2007.

My dream is to become an advocate for the Deaf community in the technical field after I graduate from Gallaudet. I enjoy playing games with my friends and hanging out with friends. I currently work for Amazon as a Prime Now personal shopper at Whole Foods in Washington DC.


Paul Khouri

“Living in the nation’s capital as a Deaf-Blind person with CHARGE syndrome, I have had the opportunity to build a full and successful life.

This year I turned 40, I found a job that fits my passion, and I live in a location where I can travel easily around the city. What makes all this possible? With a good support system of family, friends, and co-workers I am living my best life.

When I am not working at my job as a Civil Rights Testing Coordinator you can find me running my dog walking business, rock climbing, riding my bike or relaxing with my partner. “

 

 


Hi my name is Alison. I am 57 years old and happily single, living by myself in South Australia. I had a happy childhood and had friends all through my mainstream schooling years. As a young person I loved doing voluntary work in child care centres and toy library. I also loved being in the classroom setting in adult education where I completed my Childcare studies. Now I love traveling and also love doing voluntary work at our library and office work in the Royal Society for the Blind office. Those two jobs have finished recently, so now I plan to visit elderly people in their homes, as I love to play card games, talk and listen to their stories.

I only found out nearly two years ago that I have CHARGE syndrome. It was so liberating and empowering to know that I wasn’t the only one that was a bit blind and a bit deaf and couldn’t walk straight. Because I only have it mildly I have decided to put my energy into fundraising and awareness raising. Last year for a fundraiser I held lots of high teas. Our family like cooking so it was easy to have a variety of sweet treats. I also have a close circle of friends who were happy to work in the kitchen and serve. I also organised two raffles through the year and sold homemade greeting cards. Next year I plan to do a Lamington Drive.

My sister and I have spoken to various groups about Charge syndrome. For an activity we got them to wear ear plugs and distorted glasses so they get a glimpse of what it is like having CHARGE syndrome.


I’m Brandon, a 38 year old adult with CHARGE, born in 1982. I got my first hearing aid at three years old, and glasses a few years later. Grandma gave me my passion for cooking, which I’m apparently quite good at! (at least nobody’s died from it … yet.) During my 20s, I finally learned how to drive and am a proud owner of a Kia Soul, which I got with my own money. I love driving, it makes me feel a bit more independent.

I’m a ballroom dancer as well, and have won many awards. People often ask how I’m able to dance with no balance, I tell them I put one foot in front of the other and hope to stay upright! Right now I’ve been working odd jobs for a temp agency and loving every minute of it! Glasses help me to see, hearing aids help me to hear, but I’m just like everyone else, with a few minor quirks. Haha.

Through the decades I’ve been here, I’ve learned one thing: “You are in charge of your own destiny.”


I’m Chip Dixon, 40 yrs old, from Los Angeles, California. I’m hard of hearing and nearsighted (without my hearing aids, I don’t always hear that well, without my glasses I only see things up close). I’m currently working at Cost Plus World Market as a Stock Clerk, and have worked there for a year and a half now. It’s a nice job, everyone is so nice and helpful, but I do try to be independent. I tend to lip read, and listen carefully to what coworkers say, they’re aware of my hearing aids so they talk clearly to me anyway.

I volunteer at the Pasadena Humane Society, as a Dog Socializer. Due to my limitations, I just take out small/medium size dogs to play. But I do give kibbles treats to most of the dogs, through their kennels. I also take karate classes and I like to be in front so I can hear better and see better what they’re saying and doing. When I take buses and trains, I always like to sit up front, so I can see better too! I also take Special Olympic Basketball every year.

My hobbies are drawing and coloring, playing video games, chatting with friends and using the Internet, karate, taking my dog Sophie out for a walk, cooking, playing piano, collecting stuff. I have a lot of collections, mostly my favorite animals (like Seals, Sea Lions, Owls, Dolphins, Turtles) and favorite characters (like Pokemon, Disney Characters, Garfield). I go see movies and go to the mall. I like to go visit friends and visit my fiance in Alabama, and sometimes she comes to visit me.

I like to push myself and I don’t let my disabilities stop me. I like to be on my own, independent. I go with my own mottos: “Deaf People can do anything except hear” and “I can and I will.”


Hello, I’m Destiny Chinnici. I’m a 27 year old woman with CHARGE syndrome, and I don’t allow my vision and hearing issues to stop me. I was diagnosed with CHARGE Syndrome right at birth, which was a rarity in 1993. When I was in elementary school, the NYC school district was running an event called adaptive olympics, I managed to win a silver medal each year despite my balance issues. After moving to NJ in 2002-2004 I played soccer in our township and won several trophies and a medal. It wasn’t until middle school when I realized that I enjoy cooking, and it really kicked off when I was in high school. I also learned a lot about food safety during cooking class. During that time, I helped with donating money to UNICEF by asking around the school every day. I collected so much money that my little donation box started to overflow and fall apart a bit. The teacher who ran the Student Council was impressed by the amount of money I collected.

 After high school, I went to a special service school run by my county where I started training for a job. After finishing school, I worked in my local hospital’s kitchen as a kitchen aide. While there I kept the salad bar clean and stocked during lunch, and helped get the cafeteria ready for lunch. I use a transportation system for those with disabilities run by the major statewide transportation company. It gives me independence and freedom to go anywhere around my county. 

In 2016-2018 I was hired by a company who hired people with special needs to help people walk their dogs. It was fun and I got to meet some great dogs. Me and a job coach underestimated the size of a block due to us trying to avoid another dog making our client’s dog anxious, but we got her home safely without going overtime at the end. The company went out of business in 2018 due to financial issues and clients dropping out for various reasons. Now during COVID and can’t work in the hospital for health reasons, I’m working on preparing and moving onto my future to be an artist.


I’m Rafael Garrigos, 32-years old, born in Chicago. My vision is poor, so I rely on eyeglasses 24/7 since I was in kindergarten. The right eye is better with eyeglasses, but the left eye does not improve. As well, I do not have good hearing in the left ear. By the same token, I perceive the world with more empathy than without my audiovisual challenges. I never permitted CHARGE syndrome to interfere on my life. I know how far I’ll go as long as I work on my short-term objectives to accomplish long-term goals.

Ever since my childhood I was conscious of my coloboma on the left eye in many ways. For example, many of my characters had a smaller eye, but oh boy, imagine all sort of superpowers within a small eye! I love to draw from my imagination. Not to mention the struggle to draw from observation (hint: vision) that is always pushing me to work harder on my art skills. Same goes as self-taught web developer. Learning to code with JavaScript is just the beginning of a long (but exciting!) road.

Although I was born with low muscular tone and low tolerance to physical fatigue, I am still able to enjoy other activities that are not so physically demanding. On my leisure time, I enjoy going anywhere, expressing through my art, playing with my guitar, serving the community with my skills, and spending time with my long-distance girlfriend from California.