--- In 11q_disorders@yahoogroups.com, "Syretz Family" <syretz@...>
wrote:
>
> Carolyn is 14 - will be 15 in Sept. We just found out 2 years ago
that she has Jacobsens. Like all of you we have experiences so many
things in so many different areas of CArolyn's life - physical
medical problems, surgeries, emotional problems, medication issues,
school problems, financial issues, insurance battles, etc. From
what little we know CArolyn would be considered on the higher
functioning side of the Jacobsen Syndrome - which like all of you
has left us in a world where she fits no category, there is no
answer except to tackle each issue as it arises - my greatest
frustration and challenges have been because CArolyn is unique -
truly no other person, even in the Jacobsen Syndrome world is "like"
CArolyn - I would guess that is what all Jacobsen parents face every
day....
>
> Rich my husband is from CT - I am from GA- both our families are
there respectively...we have lived in RI, NJ, VA - never near any
family and have had to just figure it out
>
> I would love to get involved.
>
> Stell Syretz
> Manassas.VA
>
Stell,
I can totally relate except for my kids are on the more severe end
of the JS spectrum. They have unbalanced translocations between 11q
and 12p and they are the only ones with that diagnosis (that we know
of). So we sometimes feel like we're not sure where they fit in.
They have a lot of issues that seem unique to just them and I get
frustrated because there is nobody out there who can tell me what to
do because nobody elase seems to have the same issues as my boys. I
just have to figure things out on my own. Often when I meet new 11q
parents and they ask about Brayden and Zachary, I have to add a
disclaimer that most 11q kids are higher funtioning than my boys in
many areas so they don't get too discouraged and overwhelmed right
off the bat. But the nice thing is that while there are a lot of
differences, we have found a lot of similarities with other 11q kids
that we don't find in other places and sharing experiences is
priceless. And we as parents can all relate to the struggles of
raising any special needs child from finanaces, to medical issues,
to frustrations, etc. Anyway, after all of this rambling, I guess
my point is I hear you and I hope we can all support each other as
we raise our 11q children.
Linzee
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