Eli's Story
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Although Eli appeared to be a totally healthy baby,
not long after his parents took him home, they discovered
a bulge on his head.
They took him to the emergency room, where, to their
horror, they were told initially that although doctors
did not think the bulge on his head was related, they
had discovered that Eli was blind.
It was some time later that doctors diagnosed the bulge
on Eli's head as hydrocephalus, which would require
immediate surgery. It was during the preparation for
surgery that doctors discovered that Eli's body chemistry
was totally "out of whack." Upon further investigation,
they learned that Eli was suffering from one of the
rarest of all genetic diseases. |
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Known as osteopetrosis, the disease caused Eli's bones to
become far too dense. It was this bone density in his brain
that robbed him of his sight.
Doctor's suggested that the only hope of arresting the disease
would be a bone marrow transplant, but even this was a long
shot.
Happily, the long shot paid off and thanks to the transplant
and a host of modern-day drugs, Eli's bones started to "remodel"
themselves. Although nothing could be done to restore his
sight, for the first time in a very long time, his parents
and his doctors had hope.
Four days after his transplant, Eli celebrated his first
birthday in the hospital. Now, with the prospect of a longer
life than doctors originally forecasted, it was time for Eli's
parents to start planning his future.
Eli's mom, Ashley, had already contacted the Association
for the Blind and Visually Impaired (ABVI)-Goodwill Industries
of Greater Rochester, Inc. And it was through her exposure
to ABVI-Goodwill that her belief in a normal childhood for
her son was confirmed.
One of the many activities that Eli enjoys is horseback riding.
He was barely two years old when he first rode a horse and
in the ensuing six months grew to love riding.
According to his mom, "Every time he goes riding, he
loves when we sing his favorite song, 'Old MacDonald.'"
Little Eli also enjoys his time in ABVI-Goodwill's playgroup
where he's able to experience things through touch that other
children experience by sight.
It was during his music therapy group that Eli became a big
fan of music--so much so that he's decided he would like to
play the piano.
Helping families like the Eckman's is what ABVI-Goodwill
is all about. We've been doing it since 1913 and over those
many years we've learned that with the support of our early
intervention programs, children like Eli can and do have full,
productive lives.
A gift from you will help to ensure that Eli continues to
progress and that others just like him will have the same
opportunities to learn and grow.
"We always believed that Eli could achieve all his goals
and dreams. Since ABVI-Goodwill became part of our lives,
our hopes and dreams for his future are being realized. They've
made so many good things happen for Eli, introducing him to
music therapy, horseback riding, tactile toys, audio-described
videos and many other experiences that are so important to
childhood.
We are deeply grateful to ABVI-Goodwill and to all those
whose caring support make their services possible."
Like any 2 ½ year old child, Eli's joy of living
is evident in everything he does. With the help of specially
adapted toys and books for children, he's learning something
new every day.
Any every day, his parents become more and more convinced
that Eli's life will be everything they hoped for.
Eli Eckman has come a long way in two years. He has a long
way to go. But with the help of friends like you, there are
no limits to what Eli, and many others who are blind or visually
impaired, can achieve in their lives.
All they need is a little help from a friend. Please, be
that friend. Give to ABVI-Goodwill.
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