Photo courtesy of Melissa Milinovich Day 30 of 31 This is Claudia Milinovich’s story: My mom is a normal mom. She taught me to walk and talk — stuff any normal parent would do. Yeah, she can’t walk because she has SMA, but that hasn’t stopped her from being…
Photo courtesy of Keith Schaper Day 29 of 31 This is Keith Schaper’s story: Our son, Oliver, was officially diagnosed with SMA type 2 at 14 months old on March 7, 2017. We discovered Cure SMA and swiftly got Oliver, now 5, registered. First came an overnight…
Photo courtesy of Autumn Day 28 of 31 This is Autumn’s (@itsss.autumn.here) story: Hi! I’m Autumn. I was diagnosed with SMA at 13 months old. SMA is definitely a journey, an adventure: the machines to help me, the surgeries, and learning how to navigate a world that wasn’t…
Photo courtesy of Rachel O’Hagan Day 27 of 31 This is Rachel O’Hagan’s (@bravelikebeau) story: I am a special education teacher and have held the hands of several parents as they navigated a new diagnosis for their child. But nothing prepares you for when it is your…
Photo courtesy of Carissa Decelles Day 26 of 31 This is Carissa Decelles’ (@rheelgirl) story: Hello! My name is Carissa, and I am a 30-year-old, award-winning art director and graphic designer from eastern Connecticut. I also happen to have SMA type 2. SMA has never been a…
Photo courtesy of Edmund Lim Day 25 of 31 This is Edmund Lim’s story: There were times, after my younger son was diagnosed with SMA type 1, that I was on the verge of resigning his life to fate, feeling futile after years of trying to find a…
Photo courtesy of Michael Garcia Day 24 of 31 This is Michael Garcia’s (@teacher.mike72) story: I believe in miracles. I believe in God. I believe in his will both on earth and in heaven. Nearly two years ago, we contacted our family pediatrician to inform him that our…
The National Alliance for Caregiving, in partnership with Global Genes, has issued a free guidebook, available online, that offers resources and support for caregivers of children with rare diseases. “The Circle of Care Guidebook for Caregivers of Children With Rare and/or Serious Illnesses” was designed…
Photo courtesy of Lana del Roll Day 23 of 31 This is Lana del Roll’s (@lanadelroll_official) story: If you have a disability, you are worth a closer look. Those who can see the real you will find you and stay forever. Because you are not a disability; you…
Photo courtesy of LaMondré Pough Day 22 of 31 This is LaMondré Pough’s (lamondre_p) story: Everyone has a desire to be seen. When I say that, I’m not talking about a gratuitous need for attention, or someone stricken with the “pick me” syndrome. I’m talking about the recognition…