NFADB is a community of family members. Alone and together we have faced challenges, discovered solutions, sweated the big stuff, and celebrated the smallest of victories. These stories profile individuals who are deaf-blind and their families.
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Family Spotlight: Meet Alex Black
The National Family Association for Deaf-Blind (NFADB) is pleased to spotlight Alex Black. Alex lived a rich, meaningful life for 22 years. He was a contributing member of his church and his community, a business owner, and a cherished family member. Read more
Family Spotlight: Meet Pam Aasen
The National Family Association for Deafblind (NFADB) is pleased to spotlight Pamela Aasen of Scotch Plains, New Jersey, one of 13 scholarship winners who attended the Deafblind International (DbI) Network of the Americas Conference on behalf of NFADB in April 2018.
Pam described the experience as follows:
I was so thrilled to have received a scholarship to go to the conference. It was fabulous! For me, having moved here from Canada, it was a great opportunity to meet more people in the Deaf-Blind community. Read more
Family Spotlight: Meet Tammy Kitterman
The National Family Association for Deafblind (NFADB) is so pleased to spotlight Tammy Kitterman from Bethel Park, Pennsylvania, who is one of 13 scholarship winners who attended the Deafblind International (DbI) Network of the Americas Conference on behalf of NFADB in April 2018. Tammy described the experience as follows:
I am so grateful for both the scholarship from NFADB and travel assistance from the Pennsylvania Partnership for the Deafblind. It was truly amazing to be part of such an event and an honor to have been chosen to receive this scholarship and to have an opportunity to attend an event that encompassed the biggest of the biggest names in the deafblind community. Read more
Family Spotlight: Meet Cathy Miller
Within minutes of meeting Cathy Miller, you’ll find yourself smiling. Cathy has that effect on people. Her warm and welcoming personality makes you feel right at home. But behind this gentle spirit is an active and confident advocate. Cathy is a member of Louisiana Acadiana Deaf-Blind Citizens, President of the Deaf-Blind Division of the NFB of Louisiana as well as the President of the Lake Area Chapter of the National Federation of the Blind. She is such a great advocate and role model that the Usher Syndrome Coalition recently asked her to become an ambassador. In this role, Cathy will educate the community about Usher syndrome and provide information and resources as needed. Read more
Family Spotlight: Meet Amanda Huston
When you meet Amanda, she’ll probably have a pet happily sitting in her lap. That’s because two years ago, Amanda started a pet sitting business called Fur Babies. Born 26 years ago with spinal cerebellar ataxia, optic atrophy and progressive hearing loss, Amanda loves to stay busy. When she’s not pet sitting, you may find her speeding across the water in her wheelchair water ski. A resident of Austin, TX, Amanda also attends Austin Community College. She is a happy, successful DeafBlind young adult who loves to spend her free time with family and friends. Read more
Family Spotlight: Meet Devin Carpenter
Meet Devin, a twelve year old boy who lives with his mom, Courtney, in Wichita, Kansas. Devin was born with Mosaic Trisomy 22, a rare chromosome disorder in which chromosome 22 is present three times, instead of the usual two times, in some cells of the body. The severity of the disorder can depend on the number of cells in which the extra chromosome 22 is present and, for him, it’s the cause of his deaf-blindness. Family has always been the cornerstone of support for him and his mother. Devin is pictured here at the pool in his Grandma and Grandpa’s back yard – which happens to be his favorite place to swim! Read more
Family Spotlight: Meet Orion Withrow
Orion is a snowy haired five-year old with an infectious smile. His family moved from Maryland to Austin, Texas in 2012, when Orion was 2 years old. They moved because they found Austin offered programs and appropriate educational opportunities for all three of their children. Orion and his older brother, Skyler, who is deaf, are enrolled at the Texas School for the Deaf. Anastasia, Orion’s older sister, who is hearing, attends a public school in the family’s neighborhood. Orion’s dog, an adorable Chihuahua who is deaf, stays home and enjoys the wonderful Austin climate. Read more
Family Spotlight: Meet Billy Pickens, III
William (Billy) M. Pickens, III, is a typical 18 year old. He loves to write, talk and listen to music and sports. He is enrolled as a freshman at University of North Carolina-Charlotte as a communications major. He aspires to be a radio broadcaster and writer after graduation. Oh, and Billy happens to be deaf-blind as a result of Norrie’s Disease. He was born totally blind with a progressive hearing loss. Billy and his mom, dad and sister, Hazel, live in North Carolina. His mom, Debra, became a member of NFADB in order to obtain information and resources for Billy and her family. Read more
Family Spotlight: Meet Noah Blu Sewell
Noah Blu Sewell, who goes by Blu, is a young man with a mission—to help keep his customers’ clothes in great shape. Blu works alongside his dad in the family dry cleaning business in Gilmer, Texas. Read more
Family Spotlight: Meet Meri Dwyer
Our daughter Meredith Dwyer is 22 years old and she goes by the nickname Meri. The nickname suits her perfect because she is truly a merry and happy young woman.
From the beginning Meri has been a consistent little miracle. We were given lots of grim information on all the things she wouldn’t be able to do, but not one of those pieces of information included all the amazing things she would be able to do! Read more
Family Spotlight: Meet Luis Julio
Español: Luis, o el gran Luilli como le solemos decir, tiene 20 años y vive en PR con su mama y demás familiares. Desde que nació demostró ser un gran guerrero, nació con múltiples enfermedades crónicas de salud, entre ellas la perdida auditiva y la Retinitis Pigmentosa.
English: Luis, or “the Great Luilli” as we like to call him, is 20 years old and lives in Puerto Rico with his mother and other relatives. Since he was born he has proven to be a great warrior. He was born with multiple chronic diseases including hearing loss and Retinitis Pigmentosa. Read more
Family Spotlight: Meet Brent McGuire
Brent is turning 16 this summer and is off on a six week adventure. He is taking part in a program sponsored by the Nebraska Commission for the Blind in which he will spend his time working and learning life skills. Although Brent won’t start driving in his 16th year, he is every bit a typical teenager. He enjoys video games, phones, texting, friends and girls. In the future, he hopes to attend the camp at the Helen Keller National Center and aspires to be a video game designer or a History Teacher. Read more
Family Spotlight: Meet Thomas Lill
Thomas lives with his parents and two sisters, Anna and Clare, in Lilly, PA. He is a currently a preschool student where he has had his first experience with an intervener. Next year he will transition into Kindergarten. Although the cause of his deaf-blindness is unknown, he uses his other senses to the best of his abilities. Thomas loves to interact with others. He also enjoys exploring his environment, and most of all, riding on his swing in the beautiful spring weather. Read more
Family Spotlight: Meet Elijah Ramos
On February 2, 2015 my brave boy underwent his second mid-face advancement. His first was when he was five years old. It was one the toughest surgeries and recoveries we (Elijah, myself, and husband) had to deal with. So we started preparing ourselves months in advance for the second mid-face. We were bracing ourselves for a long and rough recovery both physically and mentally. As a parent, when you see your child in such extreme pain and there’s not much you can do but sit by his bedside holding his hand and praying, it literally breaks your heart! I so often asked God to put me in his place and let me be the one to go through the pain! Read more
Family Spotlight: Meet Patsy Izaguirre
Meet Patsy, a 27 year old young lady from Texas who is deaf-blind. Patsy and her family have been members of NFADB since 2003, when they attended the NFADB conference in Tampa, Florida. She says she joined NFADB because she wants to be part of an organization that is making an impact at the national level.
Patsy has been a pioneer in her pursuit of a free and appropriate education. At age 3, she was fortunate to have a paraprofessional acting as an intervener when she began school in 1991. She continued to work with a paraprofessional providing intervener services throughout her school years. Read more
Family Spotlight: Happy Birthday, Sara O’Donnell
Happy 50th Birthday! In 2014 and 2015 many deaf blind adults will celebrate their 50th birthdays. Sara O’Donnell was born in 1964 after her mother was exposed to the rubella virus, sometimes called the German measles, during her first trimester of pregnancy. She was born legally blind and totally deaf, with cerebral palsy and intellectual disabilities.
Sara celebrated her birthday with cake and balloons, and her favorite candy, M&M’s! Sara’s sister, Diana Griffen, joined the Board of NFADB in 2014. In honor of Sara’s birthday, she sent out an email to her friends and family asking them to like our Facebook page and to register to make their purchases through Amazon Smile, naming NFADB as their organization to receive the donations from their purchases. The next thing she knew, donations started coming in to NFADB to honor Sara’s 50th Birthday! Thank you to all those who contributed to NFADB, and HAPPY BIRTHDAY SARA! Read more
Family Spotlight: Arnie Quibranza Mejia
The bus driver pointed out towards the city. He wasn’t exaggerating at all when he told Kenny and me about the towers going up in flames and that downtown was in a state of panic. We could see smoke billowing out of what seemed like miniature towers from miles away in Little Neck. Kenny holds out his left hand towards my lap, sensing my anxiety. I reached for my cell phone in my pocket and make a call to my brother. I’m sure the agency would forgive me for breaking the rule of making personal calls during work. Kenny and I were miles away from the twin towers and I just had to make sure my brother was safe. The bus driver said that circuits would be too busy with all the people using it at the same time, but still I had to try since Arnel worked just a few blocks away from the towers and God only knows if the building he works at is also affected. Read more
Family Spotlight: Sandy Kenrick
I am a mother of two handsome, busy, outgoing little boys. My oldest, Liam, is very bright, social, curious and happens to be deaf-blind. He became sick with bacterial meningitis when he was 2½ years old, which resulted in him losing his sight and hearing. He is such a brave boy who has embraced his new world of deaf-blindness and is happy and thriving. He has had to relearn how to communicate. Although he used to talk with his voice, he now talks with his hands and has become a signing machine! For the most part, he uses American Sign Language (ASL) to express himself and tactile ASL (signs done in the palm of his hand) to receive information from others. I believe that he has a right to be given every opportunity to be successful in his life and education. I try to take every chance I can to learn all I can to support and be an advocate for my son. Read more
Family Spotlight: Becca Toal
Brielle is our little miracle baby, an ex-25 week preemie who we are so fortunate to have in our lives! She is now going on three and a half years old, and is full of life and curiosity! She is now going on three and a half years old, and is full of life and curiosity! She has three doting older sisters (ages nine, almost eight and five) who are very protective of her and love her immensely! Brielle has a long medical history and is still medically fragile, although she is doing much better lately. Due to her prematurity and subsequent treatments, she is profoundly deaf bilaterally, and had severe ROP (retinopathy of prematurity) resulting in near-blindness (very low vision in left eye only). She wears bilateral cochlear implants and has learned to distinguish many spoken words, though expressively she uses sign language and gestures to communicate. Read more