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Profiles
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Click on the names below
to see the profiles:
Hannah
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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.
It has been 11
wonderful years of pure joy and happiness overshadowing the unknown in our
daughter’s life. It has been an
incredible journey to find, develop and maintain relationships with other
families with similar circumstances.
It began 11 years ago when we adopted Hannah as a 3 month old
infant. Not knowing what the future
held we began our search for answers.
I had heard about MUMS (Moms United For Moral Support) and decided
to submit and article about our daughter to include a picture in hopes of
finding another mom somewhere, anywhere that could identify with what we
were going through. Shortly after
that publication had circulated I received a call from Julie Gorton of MUMS
stating that she believed that she had a match for Hannah. We were ecstatic!
Many phone bills ensued as the months
went by sharing our stories and collecting information and becoming
friends. This family we have come to
know and love are the Marcello’s.
On one of our many
conversations Jen said to me, “Are you aware that there are no adults?” This totally
shocked me and we began our mission to find others like Hannah.
It seemed that the Marcello’s genetic doctors did more specific
measurements and tests so I decided to make an appointment to see Dr.
Charles Scott. We coordinated the
visit to include meeting Taylor Marcello in person.
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.
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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
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Danny
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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.
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Dan before the 2007 Homecoming Dance with his friend, Jenna
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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 have an older brother, Jordan, who has graduated college and is married to my
Aunt Devon, and a younger sister, Katie who is 17 years old. My family and I have
attended several LPA conventions, like the ones in 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.
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Danny (age 17), with family at brother Jordan's graduation.
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Chloe
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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.
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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.
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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.
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