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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.\n\nEPISODE HIGHLIGHTS\nHow did you enter the world of rare?\nMy 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.\xa0\nWhat was it like finding out that you and your husband were carriers for SMA?\nI 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.\xa0\nDid you isolate yourself from friends and family or suffer from depression?\nI 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.\xa0\nWhat changed for you to choose hope over despair?\nWhat resources helped you along the way and what inspired Rare Mamas?\nWhat is your mantra?\n\nLINKS AND RESOURCES MENTIONED\nThe Disorder Channel Website\nhttps://www.thedisordercollection.com/\n The Disorder Channel Amazon\n https://www.amazon.com/The-Rare-Outreach-Coalition-Disorder/dp/B088T3PSSH\n The Disorder Channel Roku\n https://channelstore.roku.com/details/58305adaac080acdfc952dbeef3c27d8/the-disorder-channel\nDisorder Rare Disease Films Youtube\n https://www.youtube.com/channel/UCYPzJqCJmStgR32T_5031tQ\n Episode 065 - Beginner\u2019s Guide to Rare Disease- Anecdotes for Those Early Days of Diagnosis - Daniel DeFabio\n https://effieparks.com/podcast/episode-065-beginners-guide-to-rare-disease-daniel-defabio\n\nCONNECT WITH NIKKI MCINTOSH\nRare Mamas Website\nhttps://raremamas.com/\nRare Mamas Facebook\nhttps://www.facebook.com/RareMamas1/\nRare Mamas Instagram\nhttps://www.instagram.com/Rare_Mamas/\nRare Mamas Blog\n https://raremamas.com/category/start-here/\n\nTUNE INTO THE ONCE UPON A GENE PODCAST\nSpotify\nhttps://open.spotify.com/show/5Htr9lt5vXGG3ac6enxLQ7\n Apple Podcasts\n https://podcasts.apple.com/us/podcast/once-upon-a-gene/id1485249347\nStitcher\nhttps://www.stitcher.com/podcast/once-upon-a-gene\nOvercast\n https://overcast.fm/itunes1485249347/once-upon-a-gene\n\nCONNECT WITH EFFIE PARKS\nWebsite\nhttps://effieparks.com/\nTwitter\nhttps://twitter.com/OnceUponAGene\nInstagram\n https://www.instagram.com/onceuponagene.podcast/?hl=en\nBuilt Ford Tough Facebook Group\nhttps://www.facebook.com/groups/1877643259173346/