| Thank you for visiting
our website. Ourboysjourney.com is
a way for the Hawkins family to keep
friends and family informed about
our
life with Batten Disease.
Brandon and Jeremy were diagnosed
with Juvenile Batten Disease in 2006.
For those who are not familiar with
the disease Juvenile Neuronal Ceroid
Lipofuscinosis(JNCL) is a terminal
illness that begins to manifest between
the ages of 5-8 years old. Usually
the first signs are vision problems,
and in Brandon’s case learning
difficulties. Seizures and short term
memory loss are also a big part of
this disorder. Although the how and
why this happens still hasn’t
been discovered we do know that it
is a devastating neuro-degenerative
disorder. A once healthy and thriving
child, over time, loses the ability
to see, walk, talk and even to swallow.
Behavioral issues are frequently observed
and at times are attributed to frustration
levels. A parent once described it
like being blind, epileptic, and autistic
as well as having ALS(Lou Gehrig’s
disease) Alzheimer’s disease
and Parkinson’s disease all
rolled into a child who was once running,
jumping, laughing and playing. JNCL
children pass away in their late teens
or early twenties.
At this point, at the age of 11 and
almost 8, Brandon and Jeremy are happy
children who love to play, especially
with their dog Cubby! Also, SpongeBob,
Pokemon and Star Wars seem to be playing
a big part around our house lately!
You can see pictures of our whole
family on
our photo page. Both boys use
canes for navigation and are on medication
to control seizures. Brandon’s
short term memory is very spotty and
Jeremy has issues with behavior and
frustration levels. We are blessed
to now be in a school system and a
community that truly has the boy’s
best interests at heart. They enjoy
school, their teachers and their classmates!!
We continue to raise awareness and
funds for the Batten
Disease Support and Research Association
in hopes of finding a cure for all
forms of Batten Disease, Please check
this site for events in the Charlotte/Concord
area and the national website for
events near you. Thank you to so many
of you for the things you have done
to support us along this journey.
They are greatly appreciated!
If
you'd like to donate to the BDSRA,
please visit their site and click
on the PayPal link in the top right
corner of the page. Anything you can
donate is very much appreciated.
|
