In September of 2017, Caleb was only a few months from his 6th birthday. Our family, and his community were all celebrating more than two months seizure free for Caleb. He seemed to be more alert, and more excited than recent months. He was enjoying socializing, and engaging in school activities. We were all hoping to see him regain a lot of his lost skills until we finally received a diagnosis. Genetic testing proved that Caleb had all along been suffering from late infantile variant batten disease. Suddenly, we were just wishing we didn’t have the answers we had been so desperately seeking.
We found that Battens disease is an extremely rare neuro degenerative disease that devastates children and their families. Children with Caleb’s type of batten are certain to lose their ability to see, walk, talk, and are left bedridden before an early death between 8 and 12 years old. We were told there are currently no treatments, and no cure available for batten.
We were determined to find some kind of treatment for Caleb, no matter the cost. After doing some research, we learned that gene therapy has shown positive results, in other variants of battens disease. Luckily, we have an opportunity to team up with other hopeful families, and an amazing team of scientists who are working on research and a clinical trial for Caleb’s variant of batten RIGHT NOW! The trail, thus far, has been funded by families like ours raising money, and generous donations.
On December 13, 2011, Caleb came into the world with loud lungs, and a tremendous appetite. Becoming a single mother at a young age was terrifying, but as soon as I saw Caleb’s face, everything came completely natural. The instant bond we formed was indescribable. As Caleb developed, he was as smiley, and easy going as babies come. Caleb accomplished all of his milestones right on time. It seemed to be no time and he was sitting up, then crawling, and then walking. Caleb was 100% boy. He loved his trucks, music, any outdoor sports, all types of technology and just being mischievous, in general. Caleb was an opportunist, who colored the walls, and emptied your neighbor’s plants on the floor if you took your eyes off of him for a second. Caleb, and I did everything from, cooking and cleaning to working on my college homework together. No matter how much I wanted a momma’s boy, even at two, Caleb was an independent wild child.
But Something Wasn't Right
Around two and a half, Caleb’s language seemed to plateau, and he was showing some fine motor delays. He became so impulsive it was difficult to keep him on task. Caleb was then enrolled in preschool in hopes that he would catch up, but as time passed Caleb became more, and more fixated on his favorite movies, and objects. Suddenly, Caleb wasn’t answering, no matter who called his name. Our suspicions were confirmed when Caleb was diagnosed with autism after his third birthday.
Early intervention, meant life became a perpetual routine. Caleb attended daily preschool and intensive ABA therapy, in addition, to several hours of weekly occupational, and speech therapy sessions. No matter what obstacles Caleb faced, he always had a way of brightening up everyone’s life that he came into contact with. Over the next year, Caleb slowly showed progress in some areas but stayed the same in others.
Then Came The Seizures
Shortly after he turned four, Caleb began having subtle seizures that were initially mistaken for inattention or stereotypic behavior. In no time, these events were causing injuries. Sometimes his seizures would become so out of control that Caleb would have to be hospitalized. Over the next year, his seizures worsened, and so did Caleb’s ability to walk, talk, and even swallow. The doctors attributed his loss of abilities to his uncontrollable epilepsy. We worked hard to find the right balance between medications and the side effects.
After a year of medication changes, hospitalizations, and even surgery, there were still no answers as to why Caleb had changes in his MRI, and why we were slowly losing our boy. An adventurous independent wild child was suddenly lacking energy, and completely dependent on others for even the simplest of tasks.