Profiles

Hannah

Danny

Chloe

Mila

Stephanie

Nicholas

Nicolette

Trinity

Hannah turns 11 next month. What a year it has been. We were in Orlando for the 2005 LPA conference and plan to go to Milwaukee this year. She really misses all her friends. Hannah has been a busy 4th grader. She has had an active year with her acting. Hannah has been involved in a touring play directed by Lee Breuer from NYC. The play is Henrique Ibsen's, "Dollhouse" and she plays Ivar. We just returned from a New England tour and plan to go to Brisbane, Au in July after the conference but before her brother, Matt's wedding. She will be the Jr. bridesmaid and she is so excited.

Taylor’s mom had decided to write an article and submit it to the Providence, Rhode Island Journal and see what response she would get as she now she had connected with us. 20/20 Downtown apparently picked up the story and contacted the Marcello’s and decided to tell their story.

Little did we know at this time that the story would include Hannah meeting Taylor for the first time at the Ronald MacDonald House in Delaware.

Words can not express the emotions that exploded from all of us at this meeting. For the first time each child had looked into a mirror and saw an expression of themselves!They began to touch each other’s hair and face and measured their hands and fingers. It was awesome!  As I hugged Taylor and her mom I immediately felt a bond that would last a lifetime.

With the exposure in the MUMS newsletter and now 20/20, the response was overwhelming from people from all over the world telling us how the girls had touched their hearts.  We were introduced to L.P.A .which has been instrumental in helping us to meet other families.In our involvement locally and nationally with the meetings and conferences we have met so many wonderful people, all so very open and welcoming and willing to help in any way.We have since been on several television shows which have taken us to Germany and New York. It has been quite an experience. To be able to express our feelings and to educate people and meet other families has been our main focus over the years.

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

My name is Danny, I am 18 years old and attend high-school in Connecticut. 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 have an aide to help me in the halls, and with opening heavy doors. I enjoy playing with my friends at school, and my favorite subject is science. I plan on attending Community College after I graduate, as well as having a career.

About 6 years ago, 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 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.