Matthew's Story
Matthew experienced his first seizure in 2012 when he was five at summer camp.
Up until then he was an avid hockey, soccer and baseball player, loved school and never had anything more serious than tonsillitis. In his mother Stephanie’s words “life was normal”.
That fall, he experienced more seizures and he began medication.
An EEG and MRI revealed abnormal brain activity and a small lesion in his temporal lobe. As concerned as all were, he continued sports and school without issue, responding to therapy.
Until February the following year.
Motion sickness and an inability to lift his left arm landed him in the local Emergency Department and Matthew and his family’s life would never be “normal” again.
Matthew spent the next 18 months at Children’s Hospital of Eastern Ontario (CHEO), Toronto’s Hospital for Sick Children (SickKids) and Holland Bloorview Kids Rehabilitation Hospital. Matthew’s brain MRI revealed he now had four lesions. Doctors couldn’t explain it, and a brain biopsy did not reveal the cause. Eventually he was tentatively diagnosed with Parry-Rhomberg Syndrome, a progressive hemifacial atrophy of the skin and soft tissue. PRS can include neurological abnormalities including seizures. However to this day, including a consultations with the Mayo Clinic and Boston Children’s in the U.S., no one has been able to definitively diagnose the source of his neuropathology. And this keeps us focused on our mission to deliver novel and more effective therapies for epilepsy and other seizure related disorders.
Since 2014, Matthew has spent equal time at home and at the Roger Neilson House, a hospice for palliative pediatric care at CHEO. On a good day, Matthew has between 30 and 50 seizures and insists on going to school in his mobile wheelchair and special van. On a bad day, he has more than 200 seizures and has to remain in bed. Mentally acute and the acknowledged family joker, he communicates now only with “yes” and “no” cards.
“There are pieces of him in there”, say parents Stephanie and Bruno. He is a fighter, brave, and perseveres through bouts of intense pain as the seizures have taken their toll on his fragile frame.
Matthew has failed as many antiepileptics as he is currently taking, including the current favorite CBD. Unfortunately, he exemplifies the failure of polypharmacy for intractable or “drug refractory” pediatric epilepsy. The true diagnosis of his condition still evades physicians today. And this keeps us focused on our mission to deliver novel and more effective therapies for epilepsy and other seizure related disorders.
