medical expenses
Donation protected
Alex is a bright and whitty 13 year old that has undergone a series of life changing events over the two years. Here is Alex's story.............................
Alex was diagnosed with Epilepsy after having a Grand Mal seizure early one Sunday morning in February, 2013. He began taking many different anti-seizure medications to try and control his seizures over the nine months following that seizure but none of them worked. After many different tests (EEG, MRI, CT scans, etc.) it was determined that Alex would have to undergo surgery to try and reduce or eliminate his seizures. Doctors at Cincinnati Children’s scheduled him for surgery testing in November, 2013 for a week. During the course of the week, Alex’s body began to shut down. He was experiencing Diabetic Ketoacidosis (the onset of Type I Diabetes). His body had already been through so much with all the side effects from the anti-seizure drugs that the symptoms were overlooked. Neurologist came to our room expressing apologies and letting us know that Epilepsy Surgery would have to be put on hold until we got the Diabetes under control.
Alex had surgery in June, 2014. Despite resecting the abnormal tissue on his left frontal lobe, seizures returned with a fury. One seizure left him unable to speak for 6 hours afterward. We panicked and headed to Cleveland Clinic for a second opinion. It was there that Alex was diagnosed with Rasmussen’s Encephalitis.
Rasmussen’s encephalitis is a rare, chronic inflammatory neurological disease that usually affects only one hemisphere of the brain and is characterized by frequent and severe seizures, loss of motor skills and speech, paralysis on one side of the body (hemiparesis), inflammation of the brain (encephalitis), and mental deterioration. . Research is ongoing into the causes of this rare disease. The prognosis for individuals with Rasmussen’s encephalitis varies. Despite the advances in medical treatment, none has yet been shown to halt the progress of the disease in the long term. The disorder may lead to severe neurological deficits or it may cause only milder impairments. Hemispherectomy surgery (removal of the half of the brain that is affected) is the only known treatment to stop seizures and the progression of the disease. It allows the other side of the brain to take over. Post-surgery, patients typically need up to a year of rehabilitation to regain movement of that side of their bodies and their speech. They will never gain the use of that hand for the rest of their life.
The last three years have been difficult for Alex. We take it one day at a time. Alex can no longer attend school and is being home schooled because of seizures. He receives 2 monthly infusions every month at Children’s Hospital to treat this awful disease and takes many medications. We are not sure when the time will come for surgery but we are trying to let him live a normal life as he progresses through the disease.
Your support and prayers are very appreciated.
Friends and family are working toward assisting the family during this time of need. The cost of ongoing medications, home schooling, treatments and travel have placed significant difficulty on the family to which we pray for your assistance.
Organizer and beneficiary
Peggy Hindenlang Tally
Organizer
Lakeside Park, KY
donna erpenbeck
Beneficiary
