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Leonardo
Lagana was born July 26th, 2000 at Illawarra Regional
Hospital, Wollongong. NSW. Australia.
Giovanni
and I have two older children, Lucyanne, 21 and Matthew, 13, both of
normal stature.
In
Australia, Leo is unique and we believe this is why his diagnosis or
lack thereof is so misunderstood.
At
the time I feel pregnant, Giovanni and I were running a 60 seat pizza
restaurant virtually on our own. Money was tight and the hours were
long and it wasn?t until I became so ill I couldn?t deny something
was very wrong or I was pregnant again. I took myself off to the
doctor who confirmed it for me and I continued to work fulltime and
long hours giving little thought to this baby growing inside me, let
alone how we would cope when he or she arrived.
At
35 years old, with two grown children I decided to have an
amniocentesis for peace of mind. When the technicians were puzzled
about my dates I thought nothing of it.
The
following week when the results came back normal, my beloved father,
Leonardo Tortorici, passed away of a major heart attack. The following
months were filled with grief and little attention was given to the
pregnancy at all. The business was as busy as ever and we buried
ourselves in work. The fifth month quickly became the eighth and when
I presented at the prenatal clinic the doctor on duty was amazed at my
perceived dates and the actual size of my middle. They induced at 35
weeks gestation and Leo came quickly,{ delivered by my husband as all
staff was busy elsewhere} into the world weighing 1540grams (3 pound
11). Doctors believed that the baby would have a better chance in the
neonatal clinic at thriving but they were wrong. They quickly realized
that Leo has failure to thrive and strongly suspected mild to severe
mental retardation due to the baby?s inability to suck.
Leo
was fitted with an NG tube and when feeding did not improve was
released from hospital 8 weeks later.
At
home, after 8 weeks of sound sleeping for me, life changed quickly. I
continued to work beside my husband, long hours in the restaurant
whilst my elderly mother, Lilly looked after the baby. When I picked
him up at between 11pm and 1am on weekends we would take him home and
set the clock to continue 2 hourly feeding throughout the night. After
6 months of expressing behind a curtain in the kitchen area, with a
twin pump as the experts insisted, mother?s milk was best?I gave
up. Leo did little to no growing and was not even on the growth charts
he was so small.
One
of the many doctors that were by now involved with Leo, suggested and
set up hire of a Kangaroo pump for overnight feeds as they feared Leo
was still in need of supplemented feedings. His body and stomach so
small often what was forced down came back up again. The kangaroo pump
had it?s own setbacks. Bags would give way in the middle of the
night and shower the room in fortified milk or Leo would turn blue and
his limbs went cold from constant hydration and wet nappies through
the night. Often the fortified milk the doctor ordered {Paediasure},
would cause him diarrhea. We tried many types but still he did little
or no growing and side effects would not subside.
Leo
fed this way till age 5. He would spend hours in bed watching and
would sing and recite a lot of what he saw. Walt Disney was his main
source of education and the window to the outside world. At age 5 when
his pediatrician finally gave up on night feeding to make him grow and
the tube came out. By this time Leo had started to eat small amounts
and loved salmon sushi, tofu and miso soup. Still suffering from a
lack of interest in food I would fill 25ml syringes with milk with
crushed biscuit, juice and anything it could aspirate and pump it in
orally. Today this is how I supplement him and know how much is
actually getting in. On the rare occasion that he did leave the house
I believed the stares were due to the NG tube plastered to the side of
his face and when it came out though ?Great now he?ll be normal
and not attract so much attention? Boy was I wrong! Leo has a very
outgoing personality and loves to play and talk to anyone.
One
day at the park a lady gave me her card with the primordial website
address handwritten on the back. I said I?d check it out and was
blown away when I did. I called to my husband with great excitement
?John!
Come see this, it?s Leo in a dress!? I was looking at a picture of
?Trinity?
I
made another appointment with his geneticist at Sydney?s
Children?s Hospital, with all the website pictures and information
in hand, but was very disappointed to travel all that way just to
hear,
?Here
in Australia, we don?t like labels?
However,
the similarities were undeniable and eventually after pestering him
with constant emails and stories and pictures from other families in
the US, he finally came round although stopped short of giving me a
formal diagnosis.
In
my eyes, all the children in the US and indeed around the world could
be Leo?s siblings and I feel a deep tie and affinity with them on
behalf of my son. I hope although great distances separate us, that
they too, see Leo as family.
Now
aged 6 years, Leo weighs 8.105grams and is 75cms in height
Today
Leo does a lot of work for a worthwhile local charity in Wollongong.
The kidzwish Foundation runs a special Christmas party ever year for
all disabled, special and disadvantaged children and Leo is proud to
be an ambassador. With lots of television exposure, a commercial and a
feature in a calendar, Leo has become quite the celebrity in the
Illawarra, instantly recognized wherever he goes.
Pauline
Lagana
Bridgette and Brad Jordan are brother and sister, who live in Sandoval, IL. Bridgette is 17 years old and Brad is 15. For more information on Bridgette and Brad, please click the link below to connect to their website!
Avery was born at 38 weeks gestation in February 2009. She weighed 4lbs and had a head circumference of 24cm. The doctors knew before her birth that she was small and had severe microcephaly and had a NICU team waiting expecting her to need intervention. Her apgar scores were 9 at both 1minute and 5 minutes. Her head was so small they weren't even sure she had a fully formed brain. Some doctors didn't expect her to breathe on her own and they were prepared to insert a feeding tube but she proved them wrong on both counts and needed no help breathing and took to the bottle right away. Though she gained very little, she was released from the hospital at 3 weeks old. We were basically told we were bringing her home but not to expect anything as she didn't have enough of a brain to develop and all of her systems would slowly shut down until she was in a vegetative state.
Avery has done nothing but prove everyone wrong. Though she gained weight and grew very slowly, she followed her own curve and developed at a slow but steady pace. At 6 weeks she was over 6lbs, 49cm tall and her head circumference was 30cm. She's had many doctor visits and has been in physio and occupational therapy since she was 3 months old. New doctors seeing her for the first time often ask if I have the right baby as the child they see isn't what they expect when reading her file. She's been holding her head up since she was born and has been reaching and grabbing at toys since 6 months old. She also started to eat strained baby food at 6 months old and though she hasn't gone on to more solid foods yet, enjoys a variety of tastes.
Her first year of life was filled with many doctor visits and tests looking for a medical diagnosis. At one month, it was discovered that she has an
allergy to milk and at 10 months we learned she has asthma. She's had EEGs, CAT scans, an MRI, an echocardiogram (she's had a heart murmur since birth),
visits with an physio-therapist and
occupational therapist,
lots of blood tests, and many neurology specialist appointments looking to see if her small head size was due to a fused skull. Thankfully we have
discovered her small head size is not due to a fused skull so no brain surgery is required but it also means her head probably won't grow much bigger
than it is today. At 9 months old she was diagnosed with Seckel Syndrome, a subtype of Primordial Dwarfism and we are waiting for test results confirming
the diagnosis.
Avery is now 15 months old and has begun to sit up independently. She's still wobbly but likes to be up and play with toys. She babbles a lot, claps her hands and gives great kisses. She now weighs 13 lbs and is 65 cm tall and fits into 3-6 months clothes. She's been this size since she was about 10 months old. She doesn't have the regular baby proportions, she has a short torso but long legs and arms so her clothes are hard to fit. In order to have her pants long enough we need to take in the waist. Her head circumference has been 32 cm since she was 4 months old, which means she has a small mouth and now that she has 12 teeth, they are crowded and growing behind one another. Her favorite things to do are play with any musical toys and playing with her older brothers and sisters.
There is no way to tell where Avery's development will end. She has already surpassed her doctors' expectations and her potential is limitless. We are
eagerly looking forward to her reaching her next milestones whatever they may be. We would be happy to communicate with other families living with Seckel
Syndrome or any other type of Primordial Dwarfism at g_webster@sympatico.ca
