PATIENT STORIES

 

MEET EMMA, OUR 2025 FEATURED PATIENT

When Emma was eight months old, she was diagnosed with Spinal Muscular Atrophy Type 1 (SMA Type 1). She was missing milestones, but her mother, Erin, didn’t really know that this could be cause for concern. Everyone would tell Erin not to worry since all kids develop at their own pace! But Emma’s pediatrician directed the family to an escalated neurology appointment at Seattle Children's. A few days later, Erin received a call that Emma’s blood test confirmed that she had SMA.

Receiving her diagnosis seven years ago changed the course of our lives, says Erin. The treatment that Emma is on was approved by the FDA only earlier that year. She was one of the first patients at Seattle Children's to have an option for treatment instead of going into palliative care. In the past, children with Type 1 SMA didn't typically live past two years old.

 

 

MEET HAILEE

Diagnosed at three years old with Morquio Syndrome, this incurable disease impacts every part of her body, except the brain.


MEET TALLY

Tally's cardiology team at Children’s thought she might be able to avoid the open heart procedure by having a less invasive catheter procedure.


MEET EMMY

In April 2015, in a span of just three weeks, our spunky 2-year-old went from complaining of pain in her hip to barely being able to walk.