Caleb's his name = faithful
Organized by: Kelly Miller
WhO is CALEB? Meet Caleb, a 5 year old boy, diagnosed with a severe genetic disorder of Epilepsy called "Dravet Syndrome". Caleb was born healthy, no medical concerns. At just 4 months he had his first seizure. The seizures have not stopped, up to 100 seizures a day, some short, some over 1 hour long. Anything can bring them on; sounds, lights, temperature, bathing..the list goes on, because of this, his life consists of staying home. Sudden Unexplained Death in Epilepsy (SUDES) is always a worry, sadly, this is an increased incidence in children with dravet syndrome. Caleb's short 5 years, seizures have caused his heart to stop beating twice, in which he had to be airlifted to the hospital in ICU for many weeks. Caleb is a fighter, but his motor and gross skills have declined. Just imagine being 5 years old, watching other kids, same age- run, play and explore. His eyes say it all as he watches... wishing to go play with them but his body won't let him... Caleb used to walk, and was able to communicate but seizures from Dravet Syndrome has left him wheelchair bound, with limited vocal communication. Imagine being the helpless parent...Never knowing when the seizures will strike... So far, doctors have failed to find the right medication(s) for Caleb to control the seizures. Sadly, research is limited for Dravet-syndrome but resistance to treatment is a known fact. Seizures happen anytime, anywhere, because of this, Caleb is home bound 99% of the year. He can't go shopping, eat out, birthday parties fearing seizures will attack. When they do come, they leave Caleb sore and exhausted. Desperately trying to care/stabilize Caleb for his short 5 years have emptied parents finances and brought them to bankruptcy. As praying parents, every single time they pray, Caleb always always smiles and wants a kiss... He IS faithful, He IS a reminder to us to be faithful.