Beverly Roberts
Our family was touched unexpectedly by Wilson’s Disease on Christmas Day 2015 when my oldest daughter suddenly began showing signs of liver failure. She was admitted to the hospital and experienced numerous complications before passing away on January 19, 2016. Due to the complications and the advanced liver and kidney failure, we did not receive a diagnosis of Wilson’s Disease until after she died. Elise was 12 years old.
After her death and diagnosis, her three younger siblings were all tested. My 9-year-old daughter and 7-year-old son were also diagnosed with Wilson’s Disease. They are currently undergoing chelation therapy and are doing well.
We sponsored the Big Wow to raise awareness of Wilson’s Disease and to build a support network for those battling this life-long disease.
Roberts Family
Our family was touched unexpectedly by Wilson’s Disease on Christmas Day 2015 when my oldest daughter suddenly began showing signs of liver failure. She was admitted to the hospital and experienced numerous complications before passing away on January 19, 2016. Due to the complications and the advanced liver and kidney failure, we did not receive a diagnosis of Wilson’s Disease until after she died. Elise was 12 years old.
After her death and diagnosis, Elise’s three younger siblings were all tested and two of them were also diagnosed with Wilson’s Disease. Thanks to their early diagnosis and proper treatment, they are both healthy and blessed to be living a full life.
Today, Karina is 13 years old and taking Galzin twice daily. She plays the bassoon in the school band and is active in Scouts where she enjoys camping and doing volunteer work.
Jonah is now 12 years old and takes Syprine twice daily. He plays the French Horn and enjoys playing soccer and video games with his friends & cousins.
Their 16-year-old sister Annika is their biggest supporter in sticking to their low-copper diet, which is not always fun. (We all miss chocolate!!)
We are sponsoring this fundraising for the Wilsons Disease Patient Registry in honor of Elise and in thanksgiving for Karina and Jonah’s health, with the hope that others affected by this life-threatening illness may benefit from early diagnosis and proper treatment.
Dr. Daniel Rubayo
My story is, honestly, one of pure luck. My name is Daniel and in the picture you can see my wife Melissa and I. We got married in June of 2018 and we’re now expecting our first daughter Lucía María. So why luck? See, I was diagnosed with Wilson’s disease in 2012, when I was 22 years old, going through my second year of dental school in Puerto Rico. I had no symptoms… none whatsoever, and I had lived a life without worry, eating EVERYTHING that as a WD patient I should avoid, multiple times a day, multiple days a week. So you may ask yourself, why did I get a test for WD? Well, that other story started about a year earlier when my younger sister was rushed to the ER because she had fainted and had an itchy head. She wasn’t diagnosed with WD until like about 4-5 months later. Needless to say, with all the strange symptoms she had, at some point my mother thought we were going to lose her. After the diagnosis, she took penicillamine for some time and got so much better so quickly, it was like a miracle. She is now in Zinc therapy.
Me? I went straight to Zinc, 3 times a day, had to stop eating a couple of foods and get labs every once in a while. She often reminds me that I owe her my life, and I kind of do haha. We’re both pretty healthy individuals and live quite a normal life so far.
Having WD never really impacted me much, I was able to adapt quickly and easily to everything the doctors recommended. It wasn’t really until 2015 when I went to the WDA Annual Conference that I realized how lucky I really was, and it was an experience that marked me. I met people that were having to deal with much much worse things than taking a pill 3 times a day. I’d lie to you if I told you that I was able to hold my tears back. It was really tough to imagine myself in their shoes. My life, as I know it, would’ve been upside down if I had some of the symptoms that I saw manifested in some at the meeting. For example, I’ve chosen a profession that requires fine motor skills and steady hands. Practising dentistry would’ve been impossible, and after so many years of education and sacrifice, that would’ve been just a little bit frustrating. Then I decided to help, however I could. With my busy schedule and ongoing education, I decided to enroll myself as a support contact for the WDA, that was the least I could do. To my surprise I have received emails and calls from people seeking help and guidance, and I have done my best to provide them, and it’s been very gratifying. Since then, I haven’t done much more than that. This year I’m trying the Big WOW because I believe it is something small for me to do that could do some good for the Wilson’s Disease Association and all of its members, the research they support and all of the patients that need the WDA to continue doing what it is doing for years to come.
Donations
Your support allows the WDA to maintain this website, produce educational materials, support research, and hold meetings for people living with WD, their families, and the healthcare community.
Membership
As a member, you have the opportunity to communicate your concerns, share your experiences, learn about the most recent advances in Wilson disease treatment and research, and contribute to important decisions that need to be made so the WDA can be a strong patient advocacy group
WILSON DISEASE ASSOCIATION
Contact Us
- Toll Free: 866-961-0533
- Phone: 414-961-0533
Email: info@wilsonsdisease.org
