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Sixteen Candles & Sixteen Wishes
Ezra Freedman-Harvey’s wishes
are to complete high school, go to culinary school,
become an Eagle Scout and this year be confirmed at
his temple. His parents' wish is that he continues
to reach all his dreams as he lives his life in a
body that must fight FD every day. Ezra has always
been a dreamer with a heart of gold. He dreamed of
going to summer camp like his sister and with the
help of Chai Lifeline he goes to Camp Simcha
Special. He dreamed of having a full Bar Mitzvah at
his temple where he would conduct the service -- and
with the help of a local rabbi, he saw this dream
come true. He dreamed of walking, running, talking,
reading, writing and learning to ride the local bus,
and with the help of countless therapists he has
accomplished all this and more. He wanted to tap
dance and his parents found a teacher who saw beyond
his poor coordination, his poor motor planning, and
saw a bright young man who could dance. And dance he
did, each year, for five years, in the recital along
with the other students.
He dreamed of not having to be on so many
medications that made him, as he said, "wobbly," and
the research team at Fordham University answered his
plea. Today he never misses a dose of Tocos or ECEG
and his parents carefully watch his diet. For that
dream the reality is he has had very few crises that
required medication over the past two years. His
migraine headaches are under control. He has more
stamina and has more time for learning, being a
child and thinking up more dreams.
Ezra is takes a special gymnastics class to continue
to improve his coordination. He goes to Boy Scouts
and is actively involved in the community. He has
long had a fascination with reading the weather
page, watching the Food Network, reading cookbooks
and biographies. He has always been wise beyond his
years, but like all young people with FD, he is
keenly aware that his life is different. He is aware
that at 16 he is not wishing for a car or hoping he
will make the soccer or baseball team or to plan for
a teen summer program in Israel, but he has figured
out how to make a place for himself in the world.
FD Hope-funded research has helped Ezra to keep
reaching milestones and has given him ways to live
out his dreams. He has reached the rank of Star in
Boy Scouting and this past summer he had his first
job working in a convalescent hospital because he
wanted to make a difference. The little boy with a
mop of red hair who started life in the NICU, who is
now a boy of 16 and has endless dreams, smiles and
plans, is now in 10th grade at a small private high
school and went to Israel for the first time in
December because his parents have told him to never
stop dreaming. |
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