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We are doing Big Wow Walks in memory of our son Patrick Allen Melvin who passed away from Wilson’s Disease complications on September 29, 2015. We had started taking him to the doctor when he began middle school for various concerns (small symptoms of Wilson’s in looking back). He was not diagnosed until he was 33 and in a very advanced state of Wilsons. We had never heard of the disease and had to really push to get him tested for it when he showed sclerosis and a high copper count. His count was very high and after he was diagnosed they aggressively started kelating with Syprine. At the height of his kelatiing his medication was disrupted due to price hikes from Valeant and the time length necessary to get a grant and continue medication. He went through 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 affects to his brain.

After contacting Mary at the Wilson’s Association we were able to get him back on his treatment although we will always believe due to the severe symptoms he had during that disruption caused damage to the brain that caused his stroke 9 months later.

He was our hero. He was an amazing young man with a huge heart, laugh and family and friends that loved him. He was the kind of guy that people would come to comfort or support him and they would leave with him having lifted them in some way –you always felt better after time with him and full of good spirits and will-he lit up a room and what we miss the most in or home is his beautiful laugh and positive spirit. He left behind brother, parents, nieces and nephews and two year old daughter and many friends all with broken hearts. We miss him horribly

It breaks our heart to look back and remember how many times we took him in stating that something wasn’t right and how it took 22 years to diagnosis the serious and for him fatal disease.

We hope this walk will give us all something to help remember him on the one year anniversary of his death and that awareness of Wilson’s and proper treatment and pricing for the medication will be addressed so the help is there when the disease is diagnosed.

 

 

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Jean P. Perog
Jean P. Perog President
Jean is a retired CPA living in Merritt, British Columbia. She has WD and has a brother with WD. Jean also served as Treasurer of the Wilson Disease Association and is an active volunteer in her community.
Carol Terry
Carol Terry Vice President
Carol was diagnosed in 1973 with WD and is a retired US Government accountant. She helped found the WDA in 1983 and served as its President for ten years. She also served as Vice-President, Treasurer and Secretary.
Mary L. Graper
Mary L. Graper VP Scientific Affairs
Mary has over 25 years experience as a volunteer leader, and is recognized for her creativity, organizational and leadership skills. She holds a B.S. degree in Education from the University of Wisconsin-Milwaukee.
Jeanne A. Friedman
Jeanne A. Friedman Secretary
Jeanne is a Licensed Clinical Social Worker and has WD. She has been with Wilson Disease Association since 2013 and lives in Kew Gardens, New York.
Stephen Walsh
Stephen Walsh Treasurer
Stephen lives in Boulder, Colorado and has a daughter with WD. He went to college at the University of Colorado and graduated with a B.S. in finance.

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