Kaleb’s Story

By: Kaleb C

Kaleb is a beautiful and loving 11-month-old baby who greets everyone he meets with his signature, single-dimple smile. Most of all, he’s taught us what it truly means to have unconditional faith, hope, and love.

After an overall healthy pregnancy, Kaleb’s mom delivered him at full-term, only three days shy of his due date, via a quick 45-minute natural and uncomplicated delivery. For the first five months of his life, he was growing strong, both physically (he was off the charts for height and 90 percentile for weight) and developmentally (smiling, babbling, rolling over, etc).

But one day, at 5.5 months old, he started dropping his head abruptly, crying in between. He only did about three drops, but after three consecutive days of the same thing around the same time of the day, we became concerned. We called a pediatric neurologist the next morning and were fortunate enough to obtain a canceled time slot for an appointment a few hours later.

The appointment went seemingly well, and the neurologist assured us that the head drops were probably nothing, as Kaleb looked so healthy and normal, but agreed to schedule an EEG a week later, just to be safe. We were just leaving when Kaleb had his very first full-on infantile spasms episode, lasting about 12 minutes long. The neurologist was called back immediately to witness it, and we were admitted to the hospital within 30 minutes. After an EEG right away, followed by a MRI the following day, Kaleb was officially diagnosed with infantile spasms and periventricular leukomalacia. During our week-long hospital stay, the hypsarrhythmia and seizure debilitated him so much that he lost all his developmental skills and couldn’t even hold his head up anymore. By the end of our stay, we noticed that the left side of his body was extremely weak and realized that he also had cerebal palsy (hemiparesis).

Our lives changed forever, and his prognosis is still wildly unknown, as 90% of infantile spasms cases result in mental retardation. But Kaleb continues to be the bravest little boy we know, with a heart of gold and a true spirit of determination. He is currently on Sabril for his IS and receives PT, OT, and ST weekly.

If you’re looking for a nonprofit organization to support, we strongly recommend CURE, as we would wish for nothing more than for a cure for epilepsy—not only for Kaleb, but for the 65 million epileptic sufferers in the world. Thank you!