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We love her exactly the way she is
Efrat Rabinowitz
When Romi was diagnosed with Angelman Syndrome, after
processing the news, my first experience was of loneliness.
We didn’t know who to turn to and the medical institutions
offered only a partial answer and at a different pace thanwhat
we needed. The day after we received the diagnosis, I decided
to establish an organization for families with children with
Angelman Syndrome. Today, 3 years later, the organization
promotes awareness of this in Israel, and works on behalf of
the families. I currently receive all the information I need from
the teamof staff at Beit Issie Shapirowhowork with Romi and
I don’t need to run around between different professionals.
Beit Issie Shapiro is a second home for us, not only a school.
Romi is learning to express herself using a communication
computer, and ismainstreamed once aweek in a local school.
Most importantly, Romi is happy! Raising a childwith disabilities
involves many difficulties; however, it provides me with an
enormous sense of satisfaction, parental empowerment and
a special feeling. The thing I would want most for Romi is for
her to be a typical child, especially for her sake. But we love
her exactly the way she is.
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When i dreamt of having a family i never
imagined that it would include so many people
Maya Segev
My Nika is 11.5 years old. At age 2, she was diagnosed with
Rett Syndrome, a difficult, dangerous and complex syndrome
that strikes almost all the body’s systems. Since the diagnosis,
I have learned about inner strength fromNika, and discovered
my own inner strength. I now focus on what’s important
- setting limitations in life, separating "the wheat from the
chaff" and unconditional love.
Immediately following Nika’s diagnosis, we received warm
recommendations about Beit IssieShapiro. Here, Nika receives
all the treatments she needs. She has friends, and we have a
second home and an address to turn to when necessary.
When I dreamt of having a family I never imagined that it
would include so many people.
But thanks to Nika, we have received assistance from people
who have become part of our family. The other parents we
have met, educators, therapists, assistants, caregivers and the
wonderful people at Beit Issie Shapiro have all supported us,
each in their ownway, and they are always there for us and for
Nika. On a personal level, I cope withmy difficulties by writing
a blog and by looking at life with a lot of humor.
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