Kayla was born in February of 2003. She was only six years old when she left us in November of 2009. She touched
the heart of everyone who met her. Her smile would light up a room and her eyes would always twinkle, even while in
pain. We never took our time with her for granted, and we watched every moment and every smile in amazement. We
all love her so deeply and though she could not tell us with words we know that she loved us just as much as well!
Kayla lived every day with a rare, painful and debilitating seizure disorder called Lennox-Gastaut Syndrome or LGS.
She lived with seizures all of her life being first diagnosed with Infantile Spasms. In the beginning, she was having as
many as two hundred or more spasms or seizures per day. As she grew her disorder changed and by the time she was
six years old she was having many types of seizures. Many medications were tried, but they were eventually increased
in dosage, another medication had to be added or the treatment changed due to ineffectiveness. Kayla was also on
the Ketogenic diet and for a time she showed a slight decrease in seizure activity but was taken off due to the difficulty
of the diet. In the summer of 2009, she received the Vagus Nerve Stimulator. The VNS seemed to be helpful with
many of the seizures, but her medications still needed adjusting to keep the tonic-clonic seizures under as much
control as possible.
It was nearly impossible for her to learn new things, but towards the last year of her life she was showing progress. We
found that repetition was very helpful. She had learned a couple of words in sign language, and although it was in her
own way, we knew what she meant. She had started to make great eye contact and seemed to be recognizing objects,
not just people. These were wonderful milestones. Kayla was receiving physical therapy, speech therapy, and
occupational therapy both at home and at school. She was responding to her therapists and she enjoyed the
interaction. She attended a special education school where she loved her First grade teachers and friends. She had
attended a few Girl Scouts events in the cafeteria and really enjoyed herself. She just loved school!
Kayla was also a big sister to two younger siblings. They had a tremendous love and appreciation for their sister and
have learned a great deal about patience, tolerance, and treating everyone equally. They love their big sister dearly,
and speak of her often. Kayla was a wonderful, loving daughter to the luckiest of parents. Through her loving and
unselfish ways she taught us patience and how to truly show unconditional love and devotion. Her smile will always be
in our minds and her love will forever be in our hearts.
We are so honored to have a research grant in memory of Kayla to help others with Lennox-Gastaut Syndrome. Thank
you for allowing us the opportunity to let our beautiful daughter’s little light shine.
With Love,
Adam and Diane Guse
the heart of everyone who met her. Her smile would light up a room and her eyes would always twinkle, even while in
pain. We never took our time with her for granted, and we watched every moment and every smile in amazement. We
all love her so deeply and though she could not tell us with words we know that she loved us just as much as well!
Kayla lived every day with a rare, painful and debilitating seizure disorder called Lennox-Gastaut Syndrome or LGS.
She lived with seizures all of her life being first diagnosed with Infantile Spasms. In the beginning, she was having as
many as two hundred or more spasms or seizures per day. As she grew her disorder changed and by the time she was
six years old she was having many types of seizures. Many medications were tried, but they were eventually increased
in dosage, another medication had to be added or the treatment changed due to ineffectiveness. Kayla was also on
the Ketogenic diet and for a time she showed a slight decrease in seizure activity but was taken off due to the difficulty
of the diet. In the summer of 2009, she received the Vagus Nerve Stimulator. The VNS seemed to be helpful with
many of the seizures, but her medications still needed adjusting to keep the tonic-clonic seizures under as much
control as possible.
It was nearly impossible for her to learn new things, but towards the last year of her life she was showing progress. We
found that repetition was very helpful. She had learned a couple of words in sign language, and although it was in her
own way, we knew what she meant. She had started to make great eye contact and seemed to be recognizing objects,
not just people. These were wonderful milestones. Kayla was receiving physical therapy, speech therapy, and
occupational therapy both at home and at school. She was responding to her therapists and she enjoyed the
interaction. She attended a special education school where she loved her First grade teachers and friends. She had
attended a few Girl Scouts events in the cafeteria and really enjoyed herself. She just loved school!
Kayla was also a big sister to two younger siblings. They had a tremendous love and appreciation for their sister and
have learned a great deal about patience, tolerance, and treating everyone equally. They love their big sister dearly,
and speak of her often. Kayla was a wonderful, loving daughter to the luckiest of parents. Through her loving and
unselfish ways she taught us patience and how to truly show unconditional love and devotion. Her smile will always be
in our minds and her love will forever be in our hearts.
We are so honored to have a research grant in memory of Kayla to help others with Lennox-Gastaut Syndrome. Thank
you for allowing us the opportunity to let our beautiful daughter’s little light shine.
With Love,
Adam and Diane Guse