2021S0592-1 10/04/21
By: Zaffirini S.R. No. 70
SENATE RESOLUTION
WHEREAS, The Senate of the State of Texas is pleased to
recognize Kalliope Benitez and to join in efforts to raise
awareness of Battens CLN5 disease; and
WHEREAS, Kalliope Benitez is a spunky and courageous young
citizen who is battling Battens CLN5 disease, a rare inherited
disorder of the nervous system; and
WHEREAS, Like most individuals diagnosed with this
condition, Kalliope developed healthily and flourished alongside
her friends and peers through her preschool years; soon after
beginning kindergarten, she began losing control of her basic
motor functioning, and today, the nine year old depends on the
full-time assistance of caregivers to meet her day-to-day needs;
and
WHEREAS, Battens CLN5 disease is a relatively unknown
condition inherited by the mutations of the CLN5 gene in both
parents, who typically show no symptoms of the disease; symptoms
can begin anytime between childhood and early adulthood, and they
usually appear around the age of five; and
WHEREAS, Research initially indicated that Battens CLN5
was a disease affecting only the Finnish population, yet further
studies have shown that approximately one in 100,000 individuals
around the world are affected by the disorder; and
WHEREAS, Awareness is key to the knowledge and
understanding of Battens CLN5 disease, and continued research
will help promote positive outcomes for young citizens like
Kalliope Benitez; now, therefore, be it
RESOLVED, That the Senate of the State of Texas, 87th
Legislature, 3rd Called Session, hereby extend sincere best
wishes to Kalliope Benitez and to her family and caregivers and
urge communities across Texas to raise local awareness about
Battens CLN5 disease; and, be it further
RESOLVED, That a copy of this Resolution be prepared in
honor of Kalliope Benitez.