hikingjeffca.bsky.social
@hikingjeffca.bsky.social
Reposted by hikingjeffca.bsky.social
This is Hope.
Hope was born with an ultra-rare genetic disorder called MLS syndrome.
She is deaf and blind.
She also has a heart condition called cardiomyopathy, which makes it difficult for her heart to pump blood.
Hope was born with an ultra-rare genetic disorder called MLS syndrome.
She is deaf and blind.
She also has a heart condition called cardiomyopathy, which makes it difficult for her heart to pump blood.
June 23, 2025 at 9:21 PM
This is Hope.
Hope was born with an ultra-rare genetic disorder called MLS syndrome.
She is deaf and blind.
She also has a heart condition called cardiomyopathy, which makes it difficult for her heart to pump blood.
Hope was born with an ultra-rare genetic disorder called MLS syndrome.
She is deaf and blind.
She also has a heart condition called cardiomyopathy, which makes it difficult for her heart to pump blood.
Reposted by hikingjeffca.bsky.social
I rarely post personal things. But I need to talk about my 4-year-old niece, Hope.
She has a rare disease. A drug called elamipretide has helped her survive.
But the FDA recently denied its approval.
Now, her health hangs in the balance.
Please share her story & urge the FDA to reconsider. 🧵
She has a rare disease. A drug called elamipretide has helped her survive.
But the FDA recently denied its approval.
Now, her health hangs in the balance.
Please share her story & urge the FDA to reconsider. 🧵
June 23, 2025 at 9:21 PM
I rarely post personal things. But I need to talk about my 4-year-old niece, Hope.
She has a rare disease. A drug called elamipretide has helped her survive.
But the FDA recently denied its approval.
Now, her health hangs in the balance.
Please share her story & urge the FDA to reconsider. 🧵
She has a rare disease. A drug called elamipretide has helped her survive.
But the FDA recently denied its approval.
Now, her health hangs in the balance.
Please share her story & urge the FDA to reconsider. 🧵