EP06 – Raising Awareness with Cure SMA Advisory Committee Member & SMA Mom Advocate Mary McHale
In this special spinal muscular atrophy (SMA) awareness episode, Nikki interviews fellow SMA mom Mary McHale. Mary’s son Danny was diagnosed with SMA at six months old. She and her husband were told that Danny wouldn’t see his first birthday. Today, Danny is a junior in college studying business administration. Mary has become a fierce SMA advocate, having sat on the Cure SMA Board of Directors for twelve years and now serving on the Adults with SMA advisory committee. She’s also an event leader, raising over $2 million towards SMA research. In this episode, Mary shares her story and learnings from her 20+ years of being an SMA mom and advocate. Mary and Nikki dive into the significance of advocacy and awareness-building efforts, how parents can plug into disease organizations, the best pieces of advice for fellow mothers on the rare disease road, and the importance of finding hope to fuel your path.
Episode Highlights
Can you give us some background on your family and your son Danny?
A neurologist looked at our happy gurgling baby and said, “sit down; he has a condition, it’s terminal, and there is no hope.” The doctor did give us some information about Cure SMA. We called them that day, and they said, “No, there is hope,“ and that was the turning point for us on this journey. I’ve learned you need to ask questions, challenge, and advocate. Learn the law, learn your child’s rights, the systems, and the processes so that you can fight for them. Never accept no for an answer.
How did you decide to start building awareness and advocating, and what has it done for you, your son, and your family?
I reached out to Cure SMA and got names and numbers of parents to talk to. I spent hours talking, learning, and tapping into everyone who could help. But it was really hard having to do it all on my own. There wasn’t content available. The more I spoke to other people, the more I could feel that I was less alone and less rare. After that, I became the mom that people were referred to talk to. We can make a difference together, and you do that in community. I’m very proud that today all of this information about care protocols, the condition, and support is easily accessed on the Cure SMA website. I’m so proud to make this path easier for everyone.
What advice would you give to other parents about plugging into disease organizations and how to best work with organizations?
It will be your lifeline but do your research, make sure the organizations are legitimate. What is their main focus, how do they spend their money, and are they an organization that will help your child achieve the goals you want for them? Gain help from others. Be specific and tell them how they can help. Provide your community the facts about the progress you’re making.
Can you talk about the importance of hope?
It’s really been the hallmark of our journey; it’s what’s fueled us. What we learned was that hope fueled us, but anything else drained and destroyed us. We also are very strong in our faith. We had everybody around the world praying for a miracle. So I do believe that you have to consciously focus on hope. I learned to take things day by day. Enjoy the good moments with your child.
What’s the best piece of advice you can give to a fellow rare mom on the rare disease road?
Realize that you’re not alone. Realize that it’s good to reach out and ask for help. Surround yourself with positive people and people who are willing to be there for the journey. It’s really important to get educated on your child’s condition because you will have to be the one who educates a lot of your health caregivers. Learn the resources. Knowledge is a superpower. With this knowledge, you can help your child have the best life possible.
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