In November 2019, our daughter, Scarlett was diagnosed with Nemaline Myopathy (NM) at 10 months old. This rare muscular disease affects 1 out of 50,000. NM causes muscle weakness (affects strength), hypotonia (low muscle tone), and reduced or absent reflexes which all affect things like breathing, swallowing, sitting, standing, and walking.
Since birth, Scarlett has been facing many challenges physically and developmentally. She has always had difficulties with feeding and gaining weight, not to mention she has already been hospitalized at least 10 times. Scarlett is now almost 2 years old and we are working on standing, strengthening her upper body, feeding by mouth, speech, and several other goals. She is very active and gets around by scooting on her butt. She is getting stronger and has made a lot of great progress, but we do need to keep reminding ourselves that everything is at Scarlett’s pace and in Scarlett’s timing. And if there is something that she cannot do, we will never rob her of the opportunity to try or to do it in her own way.
Scarlett does not let her diagnosis define her. She is so determined to overcome obstacles in her own way and achieve milestones. She is very smart and learns quickly. She loves music of all sorts and especially loves to dance. Scarlett is very curious and enjoys exploring on her own. She loves being outdoors and loves to go on car rides. Her growing personality is so funny and many people have described her as having an old soul.
With NM being so rare, people are unaware of this disease. Creating awareness can hopefully make a change in the world and help Scarlett and others living with NM by finding a treatment and/or a cure.
Stand for Scarlett and help her live a long healthy life.
Light up the Darkness -Bob Marley