Patrick's Story
Our son, Patrick Allen Melvin, passed away from Wilson Disease complications on September 29, 2015. We had started taking him to the doctor when he began middle school for various concerns—looking back, it was small symptoms of Wilson Disease. Unfortunately, he was not diagnosed until he was 33 and in a very advanced state.
We had never heard of the disease. In fact, we had to push to get him tested for it once he showed sclerosis and a high copper count. After he was finally diagnosed, doctors aggressively started chelating with Syprine. At the height of his chelating, his medication was disrupted due to price hikes from Valeant Pharmaceuticals, and the length of time necessary to get a grant to continue medication.
Patrick experienced horrible symptoms during this time—believing his clothes were on fire, drooling, slurred speech, inability to sleep, tremors that caused his arms to swing upward and behind his back—obvious effects to his brain.
After contacting Wilson Disease Association, we were able to get Patrick back on his treatment. However, the severe symptoms he had during the disruption of his treatment caused damage to his brain and a life-altering stroke nine months later.
Patrick was our hero. He was an amazing young man with a huge heart, laugh and ton of family and friends that loved him. He was the kind of guy that people would come to for comfort or support, and then they would leave after Patrick lifted them up in some way. You always felt better after time with him and full of good spirits. He would light up the room. What we miss the most in our home is his beautiful laugh and positive spirit.
Patrick left behind a brother, parents, nieces and nephews, and two-year-old daughter, along with countless friends, all with broken hearts. We miss him terribly.
It breaks our hearts to look back and remember how many times we took him to the doctor, stating that something wasn’t right. It breaks our hearts that it took 22 years to diagnose this serious—and fatal for him—disease.
We hope sharing his story in a big way and through yearly BigWOW fundraisers, we will raise awareness of Wilson Disease and its symptoms and the proper treatment. We also hope the pricing for the medication will be addressed so that the help is there when the disease is diagnosed. And, last but not least, we hope to carry the legacy of our son for years to come.