“After four months of weekly appointments trying to investigate why Harper’s body seemed to be getting weaker by the day, we were given a terminal diagnosis of Spinal Muscular Atrophy Type 1. At just six months old our world was flipped upside down. SMA is the leading genetic killer for infants under the age of two and slowly takes away the child’s ability to walk, talk, eat, and breathe.
A terminal diagnosis is not where our story ends though! There was a brand new gene therapy that would stop the progression of the disease in its tracks at a cost of 2.8 million dollars. Zolgensma is the world’s most expensive drug but it was saving these babies!
We tried fundraising this astronomical amount and while most would deem these efforts successful, we were nowhere close to our goal. The drug company put on a medical lottery and in 2020, 100 free doses were given out with Harper being chosen as a candidate for one of those coveted syringes filled with liquid gold!
Our life has changed drastically over the last two years! We have recently fought to have another drug covered to help increase her movement and have seen additional substantial gains to her entire body. We started with no head movement and now look at her go! Harper is a cheeky little girl who beams with joy and confidence. She will tell you that strong, she is brave and she is kind!”
