2015: Clark Family

Scarlet’s story started when she was 4 months old. Her parents noticed she was falling rapidly behind the typical milestones of children her age. She was resistant to sitting up unassisted and hated being on her tummy. She had an overall “floppy” appearance when it came to control of her body. Milestones she had achieved in prior weeks had seemed to have diminished. Feeling in their hearts something was wrong, they began their journey with Scarlet to discover what it could be.

After months of physical therapy, examinations, blood work, MRIs, X-Rays, and heartache, they finally received the news. Scarlet tested positive for a disease called Spinal Muscular Atrophy (SMA) Type 2. Upon hearing the news, every hope and dream they had for their daughter was shattered.

SMA is a rare, genetic, and progressive muscle disease that causes a slow wasting of muscle tissue. Although rare, SMA is the leading genetic cause of death in children. SMA affects approximately 1 in 10,000 babies, and about 1 in every 50 Americans is a genetic carrier. With no cure or even a treatment, their doctors told them to keep their daughter healthy and happy until “the end”, which is what no parent should ever have to hear.

To date, Scarlet is pretty stable, and all of her vitals are holding steady. Her parents are working hard toward keeping her comfortable with devices like her TLSO back brace, and hopefully a new wheelchair. They meet with Scarlet’s clinic team in February for a full checkup. The current day to day routine consists of checking her vent settings (respiratory routine) and her weight. They suspect she may need a feeding tube sometime in the near future, so they are closely monitoring her. Through all of this, Scarlet still maintains her place as a kid and her favorite things are Frozen, Minnie Mouse, Sophia the First and Popsicles!!!