Trevor Cusack

Trevor always had a quick wit and was very athletic. He earned A's and B's and participated in many after school programs. In October 2006, we started hearing from his teachers at Portsmouth Abbey that he was having academic difficulties. In December we had a full neuro-psych workup done and it was concluded that we should consult a neurologist.

Since then we have consulted with neurologists in Providence, Boston, New York, Detroit, Cleveland and the Mayo Clinic in Minnesota. Trevor has undergone more than 7 MRIs, 3 EEGs, 4 PET scans, 3 spinal taps, 3 skin biopsies, 1 muscle biopsy, 2 nerve biopsies, a full body CAT scan, an EMG and numerous blood and urine tests. There is still no diagnosis. They have tried several empiric treatments. None of them have yielded any positive results. We continue to push forward to try to find the key to unlock this mystery. Trevor has a lot of trouble initiating movement and sometimes has tremors and seizures. He uses a wheelchair. He is unable to speak and has difficulty eating and swallowing so has a feeding tube in order to keep him nourished. He is not able to consistently clear his secretions so also has a tracheotomy to help keep his lungs clear and free from pneumonia. On the positive side, he seems content and smiles through his eyes. Cognitively, he seems to understand what is going on around him. He continues to have trouble with short term and working memory but seems to remember everything he learned before September 2006.  We will continue to report on his progress through the journal updates.