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Here is Athena's Story:
Athena Noelle Reitano is our second daughter, her older sister's
name is Raven. Athena was born 4½ weeks premature and
had some health issues at birth, but was given a clean bill
of health by the time she was a year old. We were thrilled…we
had two beautiful, healthy children. Everything seemed wonderful.
Our family was complete with two children, and just bought
our first house. Life went on very uneventful for about a
year. Athena was hitting all of the normal physical and mental
milestones that she was suppose to, but she wasn't walking.
We were told she was probably delayed because she was a preemie,
but she would most likely walk by the time she turned three.
We ended up getting an occupational therapist for her to
help her along and we brought her to an ophthalmologist, who
prescribed glasses for nearsightedness. Other than that, we
were confident that she was fine. When Athena neared her second
birthday, we began to notice some very troubling physical
problems. She was having extreme difficulty with head control
and balance. Then she quickly lost the ability to pull herself
up or sit unassisted, she would just fall over. She also started
dragging her head on the floor when she would crawl. We panicked
and our pediatrician sent her to a neurologist. On the first
visit the neurologist told us that she had horrible news.
Athena most likely had ALS(Lou Gehrig's disease). She was
99% sure. She said Athena would never walk and life span for
the disease was very short. They did some blood work and told
us that the results would take a month.
It turns out, Athena does not have ALS. For the past year
she has been through a battery of tests to find out what she
does have. We have had many highs and lows, from the suspicion
of ALS and many other equally devastating diseases, to being
told that she had " Chronic Inflammatory Demylenating
Polyneuropathy," which is treatable and could even make
a full recovery. We even brought her to the Holy land of Medugorje,
Croatia in search of a miracle. Her health has gone back and
forth. She has had "rag doll syndrome", which is
the loss of all muscle control, only to turn around and gain
all of the skills she had lost back.
Then Athena started to get very sick again. She had a MRI
and it showed that the white matter in her brain was demylenating.
They took more blood and urine to test, and on June 7th, 2004
we received the most horrific news imaginable. Athena has
"metachromatic leukodystrophy
(MLD)." This is an extremely rare, progressive,
genetic disease. There is no cure or treatment. The disease
has caused loss of all muscle control, she is unable to chew
or swallow and can go deaf and blind. Most are left in a vegetative
state. Life expectancy is 3 to 6 years old. My perfect,
beautiful angel is going to die unless we find a cure. She
is already deteriorating quickly and.research for this disease
is extremely under funded because it is so rare.
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