I am so happy. I feel like that is exactly what I want to convey through my son's life, through our family, through Rare Mamas is that hope. Because you know, so many of us that receive a rare diagnosis for our children we are given these scariest statistics, we are given those unimaginable possibilities.
Nikki McIntosh, founder of Rare Mamas.
On Raising Rare we promise to talk about all the aspects of raising a child with a rare disease. In this episode we listen in on a heart-to-heart discussion between two mothers who are on this journey. You can almost smell the tea brewing as they talk about reaching those difficult forks in the emotional road.
Nikki is a mother whose son’s condition, Spinal Muscular Atrophy (SMA), was treated with Spinraza (nusinersen) before it was approved. In fact, it was in clinical trials. Her son is doing well and regaining some strength. In light of her own experience, Nikki has started RareMamas.com in an effort to help other mothers who have recently received a rare diagnosis for their child. Rare Mamas will be a safe place for new mamas to go to share their stories, share their worries, and get the support they so desperately need.
Next time, we will finish our discussion with Nikki McIntosh.
Sound Design: Jacob Tompkins email@example.com
Graphics: Ramya Ramaswamy ramya@cureGPX4.org