Kelan is passionate about raising awareness and a cure for this disease.
Kelan was a healthy 10 year old boy who had just finished his first season of baseball. It was a early July morning where Kelan suffered a grand mal seizure in his sleep and stopped breathing. He was rushed to the emergency room where we were refered to a neurologist. A few week later we saw the Dr. and were told it was probably a one off thing. We were sent for a EEG and MRI. During the eeg he had a absence seizure. We were told he had epilepsy. A few days later he had a MRI and the Dr called soon after and told us he had a cavernous angioma that has leaked. This is where his seizures are coming from. We had never heard of such. Over the last year Kelan has had multiple seizures, declined cognitively from them (having to learn to write again), has days he can't walk without falls and is on over 2300 mg of medicine a day that are masking his seizures on a good day. He is at risk for a big bleed at any time as well as stroke. His surgeon is wanting to remove it but afraid of stroke risk from the dry blood. However, the longer he has seizures the more his brain gets used to them. Meaning if he waits he can go from having a craniotomy to remove the malformation to having to go back and remove the entire temporal lobe. Brain surgery is the only cure. All of this from a tangled web of thin, vulnerable veins. Make awareness for this rare disease so a cure can be found.