Profiles

Hannah

Danny

Chloe

Mila

Stephanie

Nicholas

Nicolette

Trinity

Hannah is now 15 years old and beginning high school in White Bear Lake. She decided not to do cheerleading this year because she felt it would take too much energy practicing every night after a long day at school, a wise decision. She will begin a new play in February 2011 where she will participate in a 2 week workshop with the director, Lee Breuer. The play is, "The Glass Menagerie". Hannah will be playing Laura.

Hannah is also beginning the process of getting implanted teeth. She is a busy young lady with school,friends, and family. Looking forward to LPA 2011 in Anneheim and hopefully 2012 in the UK where the Olympics will also be held that year.

Hannah is an auntie times 3 now and very proud of that fact:) She is in love with the Jonas Brothers, Especially Nick! She is waiting to meet them one day. She still loves Miley, Zac and Cody, Cheetah Girls, Gwen Stefani, Vanessa H, Selena Gomez, Demi L. But Tyra is still her grown up role model she says.

We continue to go to the National LPA Conferences annually. Our primordial family has grown by leaps and bounds. There has to be more than 100 in the US. Along with this site has emerged a foundation to educate and help families financially with medical needs. We are so grateful to those that have the same kindred spirit and are willing to take the torch and run!!!

Jackie and Larry

For more information on Hannah and her career in acting, click this link: Hannah Kritzeck - Home

My name is Danny, I am 22 years old and attend Community College in Illinois. I was born in New Haven, Connecticut at Yale Hospital, and weighed 2 pounds and 13 ounces. When I was born, my mother's doctors thought I was two months premature, but I was able to breathe on my own and digest food almost immediately. I spent 10 weeks in the hospital before I was allowed to go home, mostly because the doctors couldn't understand why I wasn't growing. About a year later, the genetics department at Yale told my parents that I had a rare form of dwarfism, and that I would never reach what was considered "average" height. I am 40 inches tall, and weigh 41 pounds. I wear size 4-T clothing, and toddler size 8 shoes.

In school I use a scooter to get from class to class, and occasionally need help opening heavy doors. I have been lucky to have a really great group of friends at school, who treat me with respect, and help me out when I need it. I am currently taking basic courses, and have not decided on a major just yet.

In 1999, I started to have a problem with my back, and I was diagnosed with Scoliosis. After 12 months of bracing, I had surgery in November, 2001 at Johns Hopkins Hospital. I was out of school for two months. The surgery was successful, and my spine has stopped curving. I was able to resume swimming, running and other activities soon after the surgery. I took up Karate after my surgery and have made it all the way to apprentice black belt.

I have an older brother, Jordan, who has graduated college and is married to my sister-in-law Devon, and a younger sister, Katie who is 18 years old. My family and I have attended several LPA conventions, like the ones in Seattle, Atlanta, Dallas, Minneapolis and Salt Lake City. I had a really great time at all of the conventions, meeting other kids like me, and found out a lot more about my syndrome from the medical staff there.

I hope that anyone who has a child or a friend with dwarfism will contact the LPA because they are a very good organization and have helped me and my family very much.

Danny (age 17), with family at brother Jordan's graduation.

My name is Elizabeth and I would like to introduce my daughter, Chloe Joy. Chloe is a happy, active 4 ½ year old, who is 18 lbs, 32 inches tall and has just been diagnosed with Primordial Dwarfism.

My pregnancy was complicated by severe IUGR and cessation of growth at 30 weeks. Chloe was born at 36 ½ weeks weighing 3 lb 3 oz (1460 grams) and measuring 16 inches in length. Her APGAR scores were 8 and 9, but we were still given a dreadfully bleak prognosis. Her doctors added an NG tube at only 10 days old in an attempt to accelerate growth, even though she was eating fairly well at that point. It hurt and went against our instincts to have her tube fed, but we were told her survival depended on it. She remained in the NICU 45 days. 

Chloe grew somewhat “typically” for the first year of her life, mimicking the growth curve, though well below it. Her linear growth slowed first, at about 9 months, and overall growth has been minimal since then. Her first year was also complicated by severe vomiting. She vomited every time she was fed, but we were instructed to feed her around the clock. Parenting felt like a marathon. She stopped oral feeding by 3 months old; she refused to swallow anything but water for the next year and a half. She was hospitalized again at 6 months for lack of growth and the severity of the vomiting. After a week of tests and procedures we went home with no answers. At 10 months of age a gastrostomy tube was placed. She also had a muscle biopsy because her doctors assumed a metabolic error at this point. At around age 2 we began working with an out-of-state feeding specialist. We discovered by adjusting the volume, calorie content, and frequency of feedings her vomiting significantly decreased. She then began to eat food by mouth, which we call a miracle and credit to profuse amounts of prayer. Her g-tube has recently been removed. In hindsight, the feeding issues were probably created, at least in part, by medical professionals insisting we feed her more calories than her body ever needed.

By age 3, our specialists had “run out” of tests and we were still without any answers. Numerous genetic syndromes involving short stature had been ruled out. She was jokingly diagnosed with “Chloe Syndrome,” insinuating no one else was like her. A growth hormone trial was recommended at age 4. Fortunately, it was suggested we do one more skeletal survey before starting. A dysplasia was suspected and we were sent to Dr. Rimoin in Los Angeles. He made the PD diagnosis almost instantly.

Chloe is also hearing impaired. Her ears are structurally normal but are too small to allow sound down the ear canal. Unfortunately this was not discovered until 14 months of age. She learned sign language quickly and has become increasingly verbal ever since. She attends a preschool for the hearing impaired and is doing remarkably well. She is considered developmentally age appropriate and will start kindergarten next year. She has many friends and is quick to tell them “Please don’t help me.” She enjoys active play and can climb anything. She excels in gymnastics. At home she is quite self-sufficient and prefers to do things for herself.

Chloe is the firecracker of our family and adds constant joy to our lives. She has an older sister, Faith, who is almost 10 and of typical height. By God’s grace, my husband Tom and I are determined to raise Chloe with strength and dignity, refusing to limit or define her by size. We live in Arizona and welcome communication from other primordial dwarfism families. Please email us at emyngirls@cox.net.