Community Spotlight: Nikki McIntosh

Nikki McIntosh is known as the founder of Rare Mamas, an online resource that supports and empowers mothers who have children with rare diseases. She and her husband, Tony, live in Southern California with their sons Mason, age 10, and Miles, age 8. But less than a decade ago, Nikki was a marketing executive and, more importantly, a young, new mother of two. Nikki started Rare Mamas in September 2020, years after Miles was was diagnosed with spinal muscular atrophy (SMA), now having the experience and insight of those first years of their family’s new normal.

“When you become a mother, there’s something so natural, so innate, so instinctual about protecting your child,” said Nikki. “But what happens when we can’t protect them from the grips of a disease, disability, or disorder? What then?” This was the reality that Nikki faced when Miles was diagnosed with SMA at 18 months old.

“At that time, there was no treatment and still there is no cure,” Nikki recalled. “Our world went dark. As a parent, you dream about giving your child everything. You dream of giving them more opportunities than you had.” Nikki remembers that Miles was energetic, eager to learn, and so full of life, even as a baby. Nikki felt hopeful just by seeing Miles, a self-described “little ray of light with a smile on his face every day.”

“Even in the midst of the fog, it was clear that there were two paths we could take. We could fall into despair or we could choose to have hope. We looked at our son’s smiling face and we chose hope.”- Nikki McIntosh

The McIntosh family heard of Cure SMA through Miles’ neurologist soon after he was diagnosed. “We plugged into Cure SMA immediately and it was a lifeline during one of the most difficult times of our lives.” Nikki and Tony relied on Cure SMA for key information and best practices for care. “Cure SMA updated us about the research being done towards a treatment and gave us reason for hope,” said Nikki.

After attending the Annual SMA Conference for the first time, Nikki and Tony felt ready to take on SMA. They began researching and learned about a clinical trial for Miles. Miles began receiving treatment at age 2½. “The effects were significant. Not only was the drug therapy stopping the progression of the disease, but it was also improving Miles’s strength,” recalled Nikki.

Miles’s improvements have not slowed down and neither has the McIntosh family. Nikki started Rare Mamas to help support other families. “My mission is for my writing to serve as a catalyst for other rare mothers—igniting the fire in their belly, propelling them into action, and marching them forward with hope. I am compelled to help other mothers feel empowered to support their exceptional children,” shared Nikki. Her goal is to share the support and hope that she so desperate craved and needed as a new, rare mom. She also knows that as she learned from others before her, she can be the same beacon of hope for a mother experiencing these worries and stresses for the first time.

Today, Miles is a third grader who enjoys playing adaptive baseball, reading, and traveling. “Miles is very social. He has a determined, tenacious spirit and a zest for life. Miles teaches us every day about overcoming obstacles and courage in the face of adversity,” Nikki said. Like others, the McIntosh family still faces roadblocks, but they are committed to making it work. “Though our road is not easy, we do our best to keep our hope, our faith, and our sense of humor on high.” ⠀


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