Featured Friends in I Am Me from A-Z
Ellie
Ellie loves: learning about penguins (and meeting them too!), adaptive skiing, play dates with her friends, and shopping at Target! We advocate for: awareness about cerebral palsy and intractable epilepsy. Our family motto is Adapt and Conquer--we believe in living a life with no limits! Life with a disability is different, but not less! We advocate for inclusion in every aspect of life. Ellie's diagnosis: Cerebral palsy - when a person's brain and body don't talk as easily, as quickly, or as well as most people's. Movement, speech, and coordination can be more challenging for a person with CP. Follow along on Instagram @lifewithelliegirl
Gwendolyn
(In loving memory of) GWENDOLYN STRONG was born with spinal muscular atrophy (SMA). SMA is a neuromuscular disease that impacts all muscle movement, meaning Gwendolyn never walked, used a bipap machine to help her breathe, had a g-tube for eating, and spoke with her eyes. Gwendolyn absolutely loved school and being one of the kids, she was a voracious reader with a big imagination, and she also adored running and used a modified wheelchair to complete half marathons. Our family founded the Gwendolyn Strong Foudation, which helped create the first treatments for SMA, and we are now building Gwendolyn's Playground, the first inclusive playground in Santa Barbara. NeverGiveUp.org Instagram @nevergiveuporg
Truly, Macyn, & August
Truly, Macyn, and August love: Family days at Disneyland, jumping on the trampoline in our backyard, spending time with family and friends, travel, and adventure. We advocate for: awareness for Down syndrome and adoption. We are shifting narratives and creating a more inclusive world. Mom, Heather Avis, has written two books called "The Lucky Few" and "Scoot Over and Make Some Room." For more information visit theluckyfew.com or follow on Instagram @theluckyfewoffcial
Hudson
Hudson and family love: road trips, staying in hotels, going out to eat together, family movie at home, Disneyland, video games, ice-cream and swimming. We advocate for: hydrocephalus, cerebral palsy, anopthalmia awareness in hopes to create more acceptance for those that are different. Follow on Instagram @hudsons_hope or on Facebook at https://www.facebook.com/Hudsonsstory/
Alex, Sophia, & Lyla
In loving memory of Sophia. Sophia & family love: Trips to the Mountains, swimming, Cuddling, Dance parties at home, laughing and being silly. We advocate for: Raising awareness about profound disabilities and facial differences as well as fighting for healthcare, providing assistances for medical equipment and other needs of people with disabilities, and pushing for social media giants to recognize and put a stop to hate speech and discrimination towards people with disabilities and facial differences. This is all done through our organization, Sophia’s Voice, created in honor of and memory of our daughter Sophia. Sophia’s conditions: Rett syndrome and a rare craniofacial condition unrelated to Rett (it's new & has no name yet). For more information, visit www.sophias-voice.com and follow on Instagram @nataliecweaver Facebook @SophiasVoiceInc Twitter: @Nataliew1020
Violet & Juniper
Juniper and Violet love: ballet dancing, unicorns and stuffed animals, macaroni and cheese, family hikes and being silly before bedtime. As a family, we advocate for: Restoration for human trafficking victims through @pleiades_designs. We support www.reintegra.org (a portion of all sales goes directly to reintegra). Follow us at www.pleiades-designs.com or on Instagram @lynsileighc @pleiades_designs @saint_ida
Gracie
In loving memory of GRACIE. Gracie and family love: God, culture and travel, exploration and learning and Beach days. As a family, we advocate for: families affected by Congenital Heart Disease. We strive to raise awareness of CHD to promote support and action for those affected. We provide accessibility to care and financial support for families during extended hospitals stays, along with advocacy and early detection programs that promote improved outcomes for those affected by CHD. Visit www.hopeful-hearts.org and follow on Instagram @hopeful_hearts_foundation
Dorian Khalil
DORIAN loves: listening to/dancing to music, reading inspiring books, watching Disney/Pixar movies, spontaneous adventures around our multifaceted city (Los Angeles). We advocate for: acceptance, inclusion, & normalizing the “abnormal” #WhatsNormalAnyway. Dorian's Dad also writes about their journey through his book "Boy & Arrow" - it is a collection of verbal portraits of a special boy’s birth and subsequent NICU journey, told through his father’s prose. Similar to a bow & arrow that must first be pulled backwards in order to shoot towards the sky, each trial & tribulation of “hospital life” was viewed in the same vein via the vehicle of telling the story of one, Dorian Kahlil, now known to the world as Boy & Arrow. https://www.blurb.com/b/8596969-boy-arrow Follow on Instagram @dwillofthe9 @trinaboo @doriankhalil
Djanai
Djanai loves: People, Dancing & Parties! We advocate for: Cerebral Palsy and Epilepsy and Inclusion. We raise awareness through our organization InClusion ClubHouse's special events like LoveChella, Special Needs inClusion Prom and Friendsgiving. For more information, visit www.inclusionclubhouse.org and follow on Instagram @inclusionclubhouse or @lindabaptistahall or @djanaisangels
Noneet
Hiya, I'm Noneet KAUR Wahla. I have Spina Bifida, Hydrocephalus, Chiari Malformation. I graduated college with a BS degree in Psychology. I've always understood I was different, not simply because of physical differences (I'm a wheelchair user). Fortunately I've learned to adapt physically, mentally, emotionally to a world not accustomed to people that are differently abled. I enjoy using my voice to help guide others who might not be so comfortable about expressing the idea that everyone deserves love, respect, to be seen and heard in any manner possible. My favorite colors are Blue & Purple. I'm a patient advocate. I have many titles. The one I'm most proud of is Aunty (#crazyfunbrownaunty). Follow along on Instagram @noniwahla
Quinn
Quinn and his family advocate through their non-profit organization, QJoy International, ministering to friends with disabilities around the world. Follow on Instagram @qjoyinternational
Tara
Tara loves: water polo, swimming, sunsets, her heart friends from Camp Del Corazon. As a family, we advocate for: organ donation and early detection. Tara is the 4th and final Carlson kiddo. A week after she was born, mom noticed a few things that’s seemed off, and took her to a lactation clinic. From there, the nurse was doing chest compressions, and she was quickly life flighted to a more equipped hospital where we would learn of a heart disease called Dilated Cardiomyopathy, and her special heart. Despite the rocky start, she has thrived against the odds. She prides herself as being Team Manager to her sisters water polo team, and you can often find her sitting on the bench cheering and strategizing with her team. Tara sometimes needs to wear oxygen, as her special heart does not pump well enough to oxygenate the rest of her body, but lives life to the fullest, despite obstacles. . Follow on Instagram @mamakatx4
Reuben
Reuben is one of Moriah's friends since the NICU. Reuben can be found on the big screen, acting in movies such as Jeremy Camp's I Still Believe. Follow on Instagram @reubendodd
Vivian
Vivian was born with spunk and sparkle in 2007. She also happens to have a genetic diagnosis of CHARGE Syndrome. She is hard of hearing, visually impaired, has impacted balance and a congenital heart defect, among other facets of her diagnosis. She lives life with curiosity, passion and feistiness. She loves baking, reading, swimming and writing. Viv says “I’ve become passionate about anti-ableism because I live with a disability. I want to educate people about what it looks like to live life with a disability. Victoria and my mom called Moriah and me ‘two peas in a pod’. I love that Victoria wrote these books to honor Moriah and inclusiveness.”
Rudy
In loving memory of Rudy Geyling. Rudy was diagnosed in utero with Hypoplastic Left Heart Syndrome (HLHS), a congenital heart defect. After spending the first seven months of his life in the ICU due to numerous complications, Rudy defied the odds; not only by living nine years but by packing those years with more joy and love than most people would experience in a typical lifetime. He loved his family, made friends everywhere and became a celebrity in his community. He loved cars, sports, swimming, wrestling, telling funny jokes and getting help and love from so many friends, teachers and strangers who were drawn to him. As a family, we like to support Camp Del Corazon https://www.campdelcorazon.org/
Olivia, Shane, Moriah, & Jadon
In loving memory of Moriah. Olivia, Shane, Moriah, & Jadon love: going to Newport beach, watching Home Alone and drinking hot chocolate, swimming in our pool, adventuring, and hanging out with friends. Our family has been blessed with two children with disabilities--Moriah was born with CHARGE Syndrome and Shane was born with autism. We advocate for: disability awareness and inclusion through our children's book series, Moriah & Friends. Follow on Instagram @moriahandfriends and our Facebook page at Moriah and Friends
Our friends with "Hiya Moriah" from around the world!
Our friends at QJoy International used “Hiya Moriah” as a teaching resource in Uganda. They taught the children about how to see a person with disabilities, and how to practice inclusion!