It has been a while since I have written an article for WeHaveAFace.org Canada, but something tonight has inspired me to write again.
I am a mother and a caregiver. I have three children, and two of them have Huntington’s disease. My husband died from this disease. I was divorced from him at the time, but when we found out that he had Huntington’s, it was hard to help care for him as he was with someone else that controlled him and failed to take care of him. He loved his children more than anything but was not allowed to see them. He had to sneak away to visit them, even delivering gifts to them by a taxi. When he escaped from the hell he lived in, he made it back to my place to join me and the children. At that time, we, along with his sister, were able to place him in a care hospital to look after him until he passed three years later.
My daughters would visit him every day after school. He died in my youngest daughter’s arms (Erin Wade). Erin was diagnosed with the same disease at the age of 17. She has become an icon and inspiration to the world because of her spirit and strength. Her smile and attitude with this disease have been above and beyond any expectations.
From the time Erin was diagnosed, she asked me if that meant she would die like her dad. I told her no. “You will not die today, and I will do everything I can to help you. You will be well known, and you will have everything you need.” I reassured her.
From that moment on, I vowed to teach the world about Huntington’s Disease. I promised to make sure people knew that this was not contagious if you went out in public. I vowed to make a difference. So, after a thirty-eight-year career, I left my job to look after Erin. I started a charity (WeHaveAFace.org Canada) with my founder James Valvano. My amazing Vice President is Kevin Jess. Eventually, I have added many people to our board who help me in many different aspects with the charity. We have done many fundraisers and sent money to people all over Canada to help them with assistance. We’ve been blessed to help people that need ramps, those that need money because they have no one to help care for them, and so much more.
Our organization has become bigger and better every year. We have an international radio show (WeHaveAVoice) and will be starting a TV show very soon. We have this global newspaper and two award-winning international films. The Purple Road started here in Brockville, featuring my Daughter Erin Wad. Erin has this incredible ability to cope with this disease. Can you imagine being a young adult with so many dreams and hopes: graduating high school, getting married, and having five children (yes, she always wanted to have five children)? It is life-altering to be told, you have a fatal disease, and there is no cure. You will die from it.
Erin chooses to fight. She decided to be happy. Many with this disease have other issues that do not allow them to be of sound mind, and it cannot be controlled.
So, we continued to fight. Erin had a personal trainer to help with her muscles, and I put her on CBD oil. Each of these was expensive, but it helped. We just continued to live and adapt as things got worse. I moved forward and made sure people knew Erin. I held fundraisers and made sure people knew that it was ok to hug her. It was perfectly fine to talk to her, and she was not contagious. Eventually, everyone in Brockville learned to love her. They learned about this disease and made her feel normal whenever she went out into the community.
Erin has been in hospital many times. By now, we pretty much know all of the doctors and staff in the emergency, ICU, and all the floors of the hospital, unless they were just hired. The blessing is that the senior staff always educates the newer employees about Huntington’s disease and Erin.
I want to say I am very fortunate even though this disease is known as the devil of all diseases, but with Erin, she is one of a kind. She has a body that doesn’t work anymore, but her mind is perfect. She is still able to communicate; however, most JHD children will never see their twenty-eighth birthday. Erin has JHD, and she is still here. She fights every day, and her mind is still beautiful. Her body doesn’t work as it used to, and her speech is not the best.
However, Erin is always happy, she still smiles, and she still loves life. She is loved, and she knows it. In my opinion, a big part of caring for someone you love that is dying (and will die because there is no cure), will live much longer knowing that the world loves them and needs them. Erin is that person. She is an inspiration to many, and if you suffer from this disease, I genuinely hope she brought a little hope and inspiration to you as she brings to our family each day.