May is ALS awareness month. It’s an effort to help raise awareness and understanding about a disorder that affects thousands of people each year. Brigance Brigade is teaming up with the Merritt Clubs to host a Zumbathon next week to raise money for the cause.
Linaya Johnson will be a Zumbathon instructor for the event. Not just because she loves to dance, but because of what the cause means to her.
“My father was Michael DeShields and he was diagnosed with ALS in August of 2006,” said Johnson. “It’s hard and it’s tough when you lose the ability to speak and walk and talk, but your mind is still there. You’re still right there.”
Her father only had 11 months from diagnosis to death passing away in July of 2007. It was a tough reality for Johnson and her family.
“We miss Mike,” said Johnson’s mother, Rachel DeShields. “But I think he went through it in a very admirable way.”
Despite losing his ability to walk and talk, Johnson says her father always stayed positive and pushed himself to stay strong for his family. One of her fondest memories of her father was seeing his strength on her wedding day, just two months before he passed away.
“My dad at that point was in a wheelchair and he could barely talk,” said Johnson. But he was determined to give her away for at her wedding. “He stood up with his brother and my brother holding him up because standing up was a chore. He uttered the words ‘her mother and I do’ to give me away.”
It was a special moment that she and her family continue to hold on to.
“There was not a dry eye. We were all weeping and walling and the makeup is running down my dress. He gave everything he could to say that”.
“It was so beautiful. We still look at the video and we still just admire Mike.” said DeShields. “ALS is brutal and devastating, but he just accepted it. He just went through it, so the rest of us just felt that was the least we could do. Just deal with it, stay positive and go through it with him”.
Now almost 11 years later, they continue to do just that. As Johnson prepares for next week’s Zumbathon, she knows she is not just raising awareness, but also dancing in honor of her father.
“We move for those who can’t, we dance for those who can’t, we sing for those who can’t” said Johnson. “Don’t take for granted what you can do. Never take for granted what you can give and how you can help because someone else can’t do that.”
The Zumbathon will be Wednesday, May 16th at 6:30pm at the Avenue at White Marsh. All the money raised will go towards ALS support and research
