In Our Own Words
Brittani’s Story
By Brittani, an 18-year old with Kniest. High School Dating Scene I am 18 and a sophomore in college and know all too well the fun of dating with a…
Got Retinal Detachment??
Written by Marylou, a woman with Kniest. Floaters and flashes… signs of retinal tears and detachment. Marylou needed a new retinal specialist in a hurry. Thanks to good friends like Rosa, scheduling…
It’s Not Fair
An averaged-sized mom and her daughter with Kniest learn, scream, pray, grieve, and grow together. By Delia, parent of an 8-year old girl with Kniest. My daughter asked me about her…
Musing about fashion and fitting in
By Monica, a woman with SED who is 2’8″. True, fashion is one way teens try to fit in a group and yet express themselves as an individual. Thinking back…
Not Short on Talent
By HP Poudre’s Sarah Hunt, a dwarf, ranks among elite swimmers Sarah Hunt dives in the water and begins pumping her arms and kicking her legs in a furious manner –…
Trevor and Pierre Robin Syndrome
A child with SED and Complications at Birth Written by Jenny, a parent of Trevor with SED and Pierre Robin Syndrome. Trevor is now twelve years old. He had a vent until age…
Your Child with SED
Your child with SED from Birth to 36 months Written by Christine, a parent of a child with SED Infants and children diagnosed with a form of Dwarfism are entitled…
Three women with dwarfism smiling.
Meet Families with KSG
Conferences
- https://www.lpaonline.org/national-conference – Annual Little People of America Conference. Scholarships are available for people attending conferences for the first time.
- Dwarf Athletic Association of America: DAAA was founded in 1985 with the mission to provide athletic competition, guidance, support and information to people of short stature and to their families. DAAA organizes a competition annually in conjunction with the LPA National Conference to provide sports in a safe and controlled competition. DAAA expects more than 200 athletes competing in a variety of sports.
- Stickler Involved People Conference: http://stickler.org/
Children’s Camps
- Camp Little People
- Camp Little People, a summer camp for children with dwarfism in Mileville, PA: https://www.lpadistrict2.org/camp-little-people/
- Camp painted turtle in California: https://www.thepaintedturtle.org/
- National Center for Physical Activity and the Disabled list of summer camps, with resources all over the USA: https://www.nchpad.org/
- Special Needs Camps by individual disability and state: https://www.veryspecialcamps.com/
- Ask your skeletal dyspasia clinic about summer camps.
- An article on how to find a summer camps: https://kidshealth.org/en/parents/finding-camp-special-needs.html.
Movies
- Willow starring Warwick Davis, an actor with SEDC.
Books
Children’s Books
- Great children’s book about living with a disability: A Kids Book about Disability by Kristine Napper. A friendly, approachable, empowering, kid-appropriate tone throughout. Written by a diverse group of people.
- NOT TOO BIG…NOT TOO SMALL…JUST RIGHT FOR ME This book is written from a child’s perspective. The book is geared to teach children that we are all different in some way and we should all celebrate who we are. It explains dwarfism in a simple way and answers some of the most common questions asked by children. The book is meant to be a tool to open up conversation that can be used by anyone at home or in a classroom setting. The author will send the book at no cost to people who need it. There is a where teachers and parents can download coloring and activity sheets which work well with the children’s book as a complete lesson. Highly recommended book!
- Louie’s Together Playground: by Dr. Nicole Julia. Join Louie, a crafty llama with dwarfism who loves to build, construct, and create. Together, he and his friends dream up a plan to bring the very first all-inclusive playground to their town. Louie’s Together Playground is a celebration of dwarfism, diverse friendships, and inclusive playgrounds.
- Gary’s Gigantic Dream: by Dr. Nicole Julia. An upbeat, rhythmic tale of a young giraffe who gets evaluated for his very first wheelchair. Upon receiving his chair, Gary discovers newfound independence, zest for life, and a gigantic dream of his own. The Able Fables™ collection proudly represents characters with diverse abilities, empowering children, and their guardians to embrace inclusion and see first, ability. Highly recommended book!
- Come over to my house: by Eliza Hull (Author), Sally Rippin (Author), Daniel Gray-Barnett (Illustrator). This is a delightful picture book that explores the home lives of children and parents who are Deaf or disabled. The perfect book to start a conversation about disability and inclusion with parents, care-givers and children. This book is written by an adult with a disability.
- I’m just small, That’s All. By Karalee Braithwaite. Children’s Book, for Ages 3-9. This book was written by a mom of a child with achondroplasia, the most common form of dwarfism.
- ROLLING WARRIOR: The Incredible, Sometimes Awkward, True Story of a Rebel Girl on Wheels Who Helped Spark a Revolution by Judith Heumann and Kristen Joiner. As featured in the Oscar-nominated documentary Crip Camp, and for readers of I Am Malala, one of the most influential disability rights activists in US history tells her story of fighting to belong.
- Little People of America’s list of Parenting and Children’s books: https://www.lpaonline.org/parenting-and-childrens-books
Parenting Books
- Through my daughter’s eyes by journalist Dan Kennedy, parent of a daughter with dwarfism.
- Come over to my house: by Eliza Hull (Author), Sally Rippin (Author), Daniel Gray-Barnett (Illustrator). This is a delightful picture book that explores the home lives of children and parents who are Deaf or disabled. The perfect book to start a conversation about disability and inclusion with parents, care-givers and children. This book is written by an adult with a disability.
Adult Books
- Crumb-sized by Marlena Chertock: funny poetry by a woman with dwarfism.
- Walking Tall and other books by Peggy O’Neill
- Me, Kniest & Understanding: Embrace the life you gain, When you push through the pain. – an autobiography by a strong, creative young woman with Kniest.
Social Media
Blogs
- I wear shirts as dresses Doris is a 20-somethin year old full time paralegal by day and fashion illustrator/content creator by night! She started “I wear shirts as dresses” mainly for two reasons. First, to simply blog, showcase her own art work and share about her love of fashion. To share her wants, difficulties, outfits, findings in fashion…and what it’s like to live in this scary fashion world as a woman standing at three feet seven inches. The second reason was in hopes to make this blog a useful resource to other little people or for stylish moms who want to make sure their little girls are the best dressed!
- SED and related conditions group, a facebook group for the Kniest and SED/SMD community.
- Dwarf Artists Coalition
- Dasha Kirby, a college student with SEDC: https://www.instagram.com/dash_kirby/
- Dwarfism is beautiful: https://www.instagram.com/explore/tags/dwarfismbeautiful/?hl=en
- Shareen a young Malaysian woman with SEDC, https://www.instagram.com/p/Bwzhi5XJgiy/
- Caden Tenycke, a young man with SEDC: //https://www.instagram.com/cadenteneycke/?hl=en
Podcasts
- Christophe Zajac-Denek’s amazing podcast: https://ivy.fm/podcast/im-kind-of-a-big-deal-785017?tag=dwarfism: Christophe is 4’4” tall, as a result of a rare form of dwarfism, and is a journalist, audio story producer, drummer, actor, stuntman, entertainer, businessman, and an avid surfer. His show lifts the veil on this unique world by talking to people directly affected by dwarfism.
- Always Looking up: A podcast dedicated to telling honest and real stories about living in a world that was not necessarily designed for us. A wonderful podcast by and about little people! Dozens of awesome, though-provoking episodes!
TikTok
- Mackenzie, a young woman in New Jersey with Spondyloepimetaphyseal Dysplasia: https://www.tiktok.com/@mackenzie.trush?lang=en
- The grey life, a mom with SED
- Actor Warwick Davis’ twitter: https://twitter.com/WarwickADavis/status/1585010239132536832?lang=en
- Caden Teneycke’s twitter: https://twitter.com/CadenTeneycke
Websites
- Annabell Davis, an artist with SEDC.
- Read stories by and about people with dwarfism on the Understanding Dwarfism website.
- https://christophezd.com/advocate/: Christophe Zajac-Danek is driven by his mission of raising awareness for people with differences – specifically dwarfism. He believes people develop the most acceptance and understanding through intentional visibility and exposure.
- Little People of America website: National Organization for Little People with information about medical support, conferences, advocacy, inclusion and much much more!
- Peggy O’Neill, motivational speaker and little person
Youtube
- Youtube Video of college student with SED
- Doris, a Korean American woman talks about growing up, fashion, and life with dwarfism.
- Shareen, a young woman with SEDC living in Malaysia . wants to share her story so other young Persons With Disabilities (PWDs) can see that life does get better, no matter how hopeless it may seem at the time.
- Demond, a 3’1″ young man with SED who is also a boxer. “Give me a step stool, and I am unstoppable!”
- Mackenzie, a young woman with Spondyloepimetaphyseal Dysplasia https://www.youtube.com/watch?v=u41ApfQbpT8
- Special Books by Special Kids video of a mom with dwarfism and her two children.
- Special Books by Special Kids video about a young man with dwarfism.
- One Woman Gets Real About Dwarfism | Get Real | Refinery29:
As a 4-foot-1-inch woman living in New York City, Sofiya Cheyenne gets a lot of stares. She’s more than willing to educate strangers on her type of dwarfism – a result of the rare skeletal disorder spondyloepiphyseal dysplasia congenita – but serving as an impromptu spokesperson for all little people gets exhausting. Sofiya is an actor based in Brooklyn. You can see more of her work at www.sofiyacheyenne.com