Newlyweds, Annie and Ryan Landefeld, were delighted to discover they were expecting a baby just weeks after sharing their marriage vows in September. On June 20, 2009, they welcomed a healthy, beautiful baby girl, Scarlett Rose, into the world. Scarlett passed all newborn screenings with flying colors. Beginning around 10 weeks of age, they noticed that Scarlett wasn’t moving her legs, arms and head as much. She appeared to be floppy. They knew that something wasn’t right so they decided to seek the help of a Neurologist. On September 11th, after extensive medical testing, they were given a devastating diagnosis of SMA Type 1 (www.fsma.org), which stands for Spinal Muscular Atrophy.
SMA is the leading genetic killer of infants. It is a rare, genetic disease affecting part of the nervous system that controls voluntary muscle movement due to the loss of nerves in the spinal cord. One in 6,000 babies is born with SMA, and 1 in 40 people are carriers. Ryan and Annie are both carriers and unknowingly passed their copies on to Scarlett.
Scarlett will never be able to walk, stand, sit, eat, breathe and even swallow without assistance. All of her muscles are extremely weak, with the weakest muscles being the legs, upper arms and neck. Her mind and spirit are no different from that of a healthy baby. She has a bright, expressive face and eyes.
Scarlett faces a difficult battle and requires extensive medical support. Care interventions have been established to help with breathing and feeding problems, muscle weakness, bouts of illness, and discomfort. They are consulting with doctors and pursuing any treatment that might save their baby girl.