ONCE UPON A GENE - Episode 066 - Rare Mama - Nikki McIntosh - Navigating Life with Rare
Nikki McIntosh has been featured on The Disorder Channel in Life & Atrophy, a film about the day-to-day of raising a child with Spinal Muscular Atrophy and as a guest of Once Upon a Gene TV. She hosts a community called Rare Mamas where she shares tips, tools and inspiration for moms raising a child with a rare disease.
EPISODE HIGHLIGHTS
How did you enter the world of rare?
My husband and I have two sons, Mason and Miles. Miles has a rare degenerative neuromuscular disease called Spinal Muscular Atrophy (SMA). We were a typical family- young parents when we had our first son who was healthy. When we had our second son, we felt something wasn't quite right and that he wasn't reaching the same milestones. We started down the path of seeking answers and Miles was diagnosed after about six months at 18 months old.
What was it like finding out that you and your husband were carriers for SMA?
I was so naive before entering the world of rare disease. I didn't know so many rare diseases existed. To learn that we were carriers and to know something was lying in our genes unbeknownst to us was shocking. There was a level of guilt and we wrestled around with those feelings a lot in the beginning. It was a tough time trying to understand and accept and to determine how to move forward in a new way of life.
Did you isolate yourself from friends and family or suffer from depression?
I felt so weak and sad in the beginning that I didn't want to step outside my home. Once we got the answers we were looking for and got a diagnosis, I didn't want to talk to anyone about it. I went through a time of not understanding the disease, I didn't want to answer questions people may ask and I didn't have the answers to those questions. We went inward and closed off everyone except the doctors and healthcare team.
What changed for you to choose hope over despair?
There was a point that I got mad. I was told that SMA would rob Miles of his strength and rob our family of time, relationships and finances. I felt enough was enough and I wasn't going to be robbed of the best things in life- our time together, humor and joy. We had to make a decision to live our lives despite the hard circumstances. It was a choice we made.
What resources helped you along the way and what inspired Rare Mamas?
We found a foundation that is forging research forward and helping with best care practices for SMA. What I didn't find and wanted to create with Rare Mamas was the parent-to-parent resource and value. I was on Facebook groups and didn't find the positive, hopeful outlooks I was seeking. Rare Mamas is a place to find ways to move forward, to be action-focused, courageous and hopeful. There are four main pillars of the Rare Mamas mission- mindset, tools/tips, inspiration and laughter.
What is your mantra?
Courage and hope are my mantras. Hope is a choice and I choose hope because it can change actions and outcomes. Courage to take action regardless of feeling fearful is needed on the journey.
LINKS AND RESOURCES MENTIONED
Disorder Rare Disease Films Youtube
CONNECT WITH NIKKI MCINTOSH
TUNE INTO THE ONCE UPON A GENE PODCAST
CONNECT WITH EFFIE PARKS