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Taylor Marcello was born on July 1, 1993. Taylor was 13 inches long and 1 pound 13 ounces. Taylor is now
a freshman in high school and a
whopping 17 pounds, 37 inches tall. To look at Taylor you see a tiny little girl who to the human eye looks fragile. Well let me just stop you there, Taylor may be small in size but she is the biggest person I have ever had the pleasure to know. Taylor strives for her
independence as do all of the kids with Primordial Dwarfism, she has an unstoppable sprit. Last year in March she underwent a spinal fusion surgery, it lasted thirteen hours and she lost almost a liter of blood. We spent a month in ICU. Still she pushed on, it has been a long and hard recovery but Taylor is back to her usual high spirited self.
We just recently did a documentary, in the past we stayed under the radar when it came to any media, but we thought it was time and it was Taylor’s decision to do it. We thank all the other families that have participated in any type of media in the past and present, if it not for them we would not have the new found family of Primordial Dwarfs. We feel very lucky to know all of them and look forward to meeting more.
Taylor hopes to be one day be a chef or a food stylist, to prepare food for photos. As Taylor’s mom I have to say there is something profound in all of these kids, what I have noticed the most, is people in general have so many fears, fears that stop them from becoming to
their best potential what they can be .For these kids, the fear is still there, but they do not let it stop them from becoming more
than anyone in their wildest dreams ever thought they could and would be. So the
lesson
here is to not be afraid to hope and to dream, there is really nothing you can’t do.
Nicolette
This is the story of our daughter Nicolette we all live in
New Zealand a small country consisting of two islands located just off to the side of Australia.
It has a population over the two islands of about 3 million people and children like Nicolette are
extremely rare!
This was our second child, so the progress through the
pregnancy was to have no surprises until that fateful day
at 22 weeks when all movement stopped. I was not going to
admit that anything was wrong and so a visit to the
Doctor did not occur till 2 weeks later when movement was
being felt again just not so strong. This was to be the
beginning of the start of our lives together as the most
notable thing to the Drs was the lack of growth in the
baby. Tests, to see if there was any Chromosome
abnormalities followed the endless round of ultrasounds
until her delivery date in February at 36 weeks.
Nothing was found to be wrong and we were left with an
unknown as to the problem with the most promising
suggestion being placenta insufficiency. Armed with this
possible diagnosis an elective cesarean was performed on
14/2/96 and Nicolette Jane Half entered the world
weighing 2lb 14 oz (1.2 Kg) and length 15.8 inches (38cm)
long.
What followed was five weeks in the SCBU, where to the
surprise of all her caregivers she responded quickly but
never really gained any weight. Home was just a natural
progression in the life of this healthy but small baby.
Days turned to weeks, which turned to months without the
massive weight gain, and growth spurt that we had all
hoped for. Phone conversations with experts about the
growth were met with a wait and see attitude, after all
there was plenty of time for her to grow and catch up.
These were the same experts that when they finally agreed
to meet her at their clinic exclaimed "she's
miniature!" This started the possibility of Growth
hormone deficiency or a similar condition. Tests again
but with no answers everything came back normal,
the most significant No Growth Hormone Deficiency!
After many months of wait and see she was finally started on
Growth hormone on compassionate grounds to see if they
could boost her growth. Nicolette was just 2 yrs old , 25
inches tall (60cm) weighed 10lbs (4.5 Kg) and her head
circumference was 15.6 inches (37.5 cm) The experiment
lasted from March 98 till June 00 before it was decided
that even with a very high dose there was no significant
gains and it was discontinued.
At the same time all this was moving along Nicolette
developed a squint in both eyes and was noticed to be
farsighted. The squint was operated on in the July 98 and
surgery was considered to be a success (beautifully
straight eyes) for 6 months. At the end of the 6 months
it was just not possible to convince ourselves that the
eyes were straight when looking straight on one
eye would almost disappear yet again! We decided then
that binocular vision could not be saved and that any
further surgery was only cosmetic and so it could wait
until she was much older. With what was to follow this
was definitely the best choice we could have made.
During Jan 99 Nicolette had her second stroke
the first one that we had noted, but the second as
the tests indicated there was a first stroke in utero,
yep, at the time I noticed the lack of movement.
Now we were into another round of tests for a different
set of Drs.- CAT scan, MRI and Arteriogram with all this
information being sent to Boston USA for review by Dr.
Scott with a possible diagnosis of Moyamoya.
Finally nearly nine months later we had a definite (sort
of, maybe) diagnosis Moyamoya syndrome. All during
this time Nicolette had been having episodes of turning
blue, or loss of coordination and at one time in the July
a period of lost speech again later proved to be
another stroke. Her pediatrician Dr. Patrick Kelly
prescribed aspirin to thin the blood after consultation
with Dr. Scott in the USA. Thankfully for Nicolette after
4 known strokes and numerous TIA's she has
maintained all gross motor functions - but unluckily has
been affected in her fine motor skills, has Aphasia and
some learning issues have been identified.
By December 99 a visit to the Neurosurgeon
confirmed that blood flow to one side of the brain was at
about 40% of normal and the other side down to 10% normal.
Surgery was imperative and urgent to give her a new blood
supply before the carotid arteries were completely
blocked by this syndrome (cause unknown). The best option
was to take Nicolette to Boston where this surgical
procedure has been performed by Dr. Scott who is a
leading authority on this condition, but due to her
worsening blood flow flying to the USA became to much of
a risk. Surgery was performed in the Jan00 at Starship
Hospital by Dr. Andrew Law following the procedures
outlined by Dr. Scott and there has been nothing but
improvement in Nicolette's condition. However the
biggest question on most peoples lips was had she grown!
No!!!. She was now 29inches (70cm) tall and weighed 18 lbs
(8Kg) and 4 years old!
Nicolette
has two rare conditions that are totally unrelated
Primordial Dwarf and Moyamoya neither condition
affects the other. The improvement we have seen has
been in the areas of speech she has a very wide
vocab but is still only able to say 3 words at a time
no sentences. Her fine motor skills have improved
and she is now able to draw a circle although she is able
to identify shapes, letters and colours easily. Glasses
to correct the far sight and help the squint were
prescribed in Oct 00 and definitely helped Nicolette to
make more sense of the world that she sees.
Nov '00 and we have been faced with a new problem
Nicolettes teeth are malformed in that they are on
short roots and became loose and needed removing. As well
the enamel appears to be weak and has been worn away on
some teeth so necessitating dental work on the remaining
teeth. It has also been determined that the permanent
teeth underneath are misshapen and with short roots, this
will entail caps on the teeth that can be fixed in and
removal of the rest.
One thing has never changed for Nicolette
she has always adored her older sister Annalouise
(now 9yrs old) and tries to copy everything she does.
Annalouise is a keen tap dancer and we spend many hours
at dancing competitions and although Nicolette enjoys
copying she has no plans to start dancing herself. When
asked though she is very keen to explain to others with
her limited speech that Annalouise dances on stage and
wins lots of trophies I sometimes think she is
more proud of Annalouise than I am if that is possible.
Today Nicolette is nearly 5 years old and just
preparing to start Kindergarten 3 mornings a week. She
will attend school later on this year with a teacher aid
to protect her because of her size and help her with her
learning issues.
She is currently 31 inches tall (74cm), weighs 22lbs (10Kg)
and head circumference 16 inches (38.4 cm) she
wears size 12 / 18 month old clothing and size 2 shoes.
We don't know if she will have another stroke it is
always in our thoughts, but with God' guidance we
will continue to ensure that Nicolette enjoys every
minute of her life and reaches her full potential.
Linda and Gary