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MAA lot can happen in a year! Ask us how we know!! 😬 2023 was a gut punch for our family.
Marley received her #Nars1 genetic diagnosis in January 2023, and we connected with @therorybellefoundation.
In February, God presented us with something we had never considered: an individual medicine created just for Marley and her genetic mutation!
By July, we had secured the best pediatric neurologist @childrens / @utswmed in Dallas to oversee her care.
Come September, we were asked to have Marley undergo an MRI to see if she would be accepted into the @nloremfoundation program, where they would create an ASO (individual medicine for free, for life) for her.
In October, we were accepted, and by November, the lab had her samples to start working on our miracle. 🙌🏻
Like I said, a lot can change in a year. 🤯 Here’s to a whole lot more change in 2024! 🎉 #MarleysMiracle #RareDisease #Nlorem #rorybellefoundation #nanorare
@marleytherare
