Category: Stories
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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 – all while living the American dream. Living the dream is often easier said than done, just not for Hunt, 15, who stands only 4-foot-5. Hunt…
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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 a doctor’s appointment was a snap. I just had to share this story…I recently had increased symptoms of detached retina…you know the typical floaters and…
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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 to various services and programs in the United States. As a parent of a 3 year-old daughter diagnosed with SEDC, I have sought out some…
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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 7th and 8th grade were not so easy. What helped? Well, what I couldn’t get to fit in name brands, my mom bought me in…
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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 disability. I did go to Prom though in high school twice, I went with guy friends. It was very informal we had a nice time…
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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 three, trach tube until age eight. I’ll try to remember everything. Trevor was born full term by c-section, in the early 1990’s. We did not…
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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 height at age 3 1/2 years old. It was cool that we were in our hotel room at our first National Dwarfism Conference, in LA. I…