Logan & Kaleb B.
Condition: Dravet Syndrome
City, State: Kirkland, WA
Club: Sandburg Elementary School Sparrow Club Service Hours: 268
Date Adopted: 11/09/2012
Like any happy, expectant parents, we were overjoyed by the birth of our darling twin boys. They came into the world ﬁve weeks early on January 6, 2011. Triumphing prematurity, at nearly 6lbs each, they came home healthy and happy to have room to stretch out in the world.
At 10 months of age, our babies were hospitalized and placed on a very strict high fat, low carb, low protein diet called the Ketogenic Diet. It is used to treat epilepsy, among other things. Each meal was 133 calories and weighed out to a 0.1 of a gram. This diet is their miracle thus far . . . it has given us a quality of life back! They only have status (seizures longer than 30 min.) with severe stress on the body ie: surgery or illness now.
Although seizure control is 'better' they still seize everyday, 100+ sometimes. It has been a rough summer with two surgeries followed by difficult recoveries. Each boy did a stint in the ICU afterwards. We truly hope the tough stuff is behind us for a while and that they can live in peace, and enjoy the upcoming holiday season free from hospitals and waking up to a house full of paramedics (“the blue guys” we call them).
These two boys are such happy, sweet and loving characters....SO full of personality! One therapist calls them her “Cherubs”, another her “Giggle Boxes”. They work hard in their therapies, love life and simply adore being around other kids. They love each other very much and we are honored to be their parents, even if it is a tough road. They truly are the light in our lives.
Dravet Syndrome is accompanied by learning difficulties, behavioral problems and severe global delays-especially language and motor skills. The disease is progressively detrimental with most children developing normally for the ﬁrst 1-2 years of life; after that their quality of life steadily declines with seizures persisting throughout life. Our dynamic duo will be dependent on others for the rest of their lives. Currently, there is no cure. We have HOPE through research, early diagnosis with early, accurate interventions and increasing awareness!