Meet Sarah Inks
Sarah Inks is ten years old and in the fifth grade this fall.
She was diagnosed with juvenile Batten Disease about one year ago.
She is now blind and suffering from progressively worsening mental
and physical impairments, but there is much more to Sarah than the
terrible disease she suffers from.
Sarah loves to ride her big wheel as fast as she can. She is an
avid swimmer and outdoor enthusiast. Whenever the weather allows,
she goes camping with her family. This is her favorite activity
and she likes to be involved in all camp endeavors such as cooking,
hiking, building campfires, roasting marshmallows, and best of all,
fishing with her Daddy. Sarah loves to travel and explore new places.
She loves calling her extended family and friends on the phone.
Although Sarah sometimes becomes frustrated with her growing physical
and mental challenges, she never complains. She does not feel sorry
for herself, and spends a large part of her life thinking of and doing
for others. She is a beautiful, happy child who is full of enthusiasm
and bravery. If you think she sounds like an angel it is because she is...
and it is a privilege to know her and be a part of her life.
To learn more about Sarah or leave a message for her, please visit her
website at sarahinks.com.
The Batten Disease Support and Research Association:
A Light in the World of Darkness
Batten Disease is an inherited, degenerative, neurological disease that
primarily strikes infants, toddlers, and school age children. Children
afflicted with this disease suffer from blindness, seizures, mental
impairment, spastically, and loss of motor skills among other things.
There is no treatment and it is always fatal.
The mission of the BDSRA is to be an international support and research
networking organization for families of children of young adults who are
afflicted with Batten Disease. They provide valuable services to families
in need such as medical specialists referral, sibling support, genetic
testing and counseling, bereavement outreach, and many other important
support services. They provide medical specialists with information and
give medical and educational specialists referrals. This organization
is extremely important to children afflicted with Batten Disease as well
as their families, educators, communities, and the medical team that treats
them. Fifty cents from the sale of each cookbook will go to the BDSRA.
For more information or to make a donation, please contact:
Batten Disease Support and Research Association
120 Humpheries Drive, Suite 2
Reynoldsburg, Ohio 43068
Phone: 1-800-927-4298 (outside U.S.A. and Canada: 1-740-927-4298)
http://www.bdsra.org
E mail:bdsra1@bdsra.org
The proceeds from this cookbook
(minus the .50 that goes to the BDSRA) will go to the Sarah Inks Trust.
This a special needs trust fund that helps to improve and maintain
the quality of Sarah's life.
The goal is to raise at least $250,000 dollars. For more information,
please go to sarahinks.com.
Donations can be made at any Omaha area Wells Fargo Bank (specify Sarah Inks Trust),
or mailed to Sarah Inks Trust, 912 Hickory Circle, Bellevue, NE 68005.
