Any parent can attest that having a child can be the best feeling in the world. And once you have that child in your arms, you’re willing to do anything for them.
In October of 2016, Rachel Enos gave birth to a seemingly healthy baby girl, Brooklynn. For the first month, everything was fine—until something about Brooklynn started to change.
Brooklyn had developed a rare condition called Spinal Muscular Atrophy (SMA), which made her lose feeling in all of her limbs, and she also lost her ability to smile.
This devastated her parents, as this had all happened so quickly.
“We thought we were losing her,” Brooklyn’s mother Rachel said after her baby daughter had pneumonia while also dealing with her SMA. “They didn’t tell us anything besides nine to twelve months would be a great timeline for her life.”
After hearing this straight from the doctors, and given that the life expectancy for SMA is around 18 months, her parents were preparing to cherish their final few months with their baby girl.
But then Rachel and her husband found a glimmer of hope for their baby.
Brooklynn was given an experimental drug called Spinraza, and she started regaining feeling in her limbs again—and she was able to smile!
The baby girl was one of the youngest to ever try the drug, and it worked well for her. She is required to take the drug once every four months for the rest of her life. And it isn’t cheap either; the drug costs several hundred thousands of dollars to purchase every year.
But Rachel was unfazed, even quitting her full-time job to be available to care for Brooklynn. She even said that she would “live in a shoe box” before giving up her baby girl.
It looks like the drug is definitely working, because last month, Brooklynn was able to celebrate her first birthday!
Aside from Brooklynn, SMA affects 1 in 11,000 babies born in the U.S.
SMA remains as a genetic disease, as no other potential causes have been identified. There is no cure, but Spinraza has shown that the future for SMA treatment is very promising, as is baby Brooklynn’s future as well.
Go here to learn more about SMA.