| We have two objectives
in mind for you when you visit. First,
we will update you on the progress
of our boys as their journey through
life with Batten Disease continues,
please be sure to visit our
blog often for frequent updates.
Second, we hope to raise awareness
of the disease and research dollars
to find a cure.
Brandon and Jeremy have Juvenile
Batten Disease, one of four forms
of Batten Disease typically found
in the U.S. Batten Disease is an inherited
genetic disorder that is fatal and
has no cure at this time. Clinical
trials are underway for Infantile
and Late Infantile Batten Disease,
and a clinical trial is planned in
the near future for Juvenile Batten
Disease. Symptoms of Batten Disease
vary from form to form, but usually
include vision loss, seizures, ataxia,
short term memory loss, and loss of
muscle control, including the ability
to walk, talk and even swallow.
It has been almost two years (June
2006) since Brandon’s diagnosis
and his eyesight is about gone. He
does remarkably well with the vision
he has left. His seizures have been
controlled by medication so far. Jeremy
was diagnosed almost 5 months after
Brandon and with no apparent symptoms
at that point. However in the last
year his eyesight has significantly
decreased and he has started his seizure
medication as well.
Despite all this we currently have
two happy and otherwise healthy children
that we thank God for every day. We
have had difficult times over the
last few years, but we have met and
gotten to know some amazing people
and families along the way.
Thank you for visiting our website,
the blog and photo pages will change
more frequently so check back often,
and please tell your friends and families
to check us out as well.
Thanks!
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