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Surprise Your Kids with an Outdoor Movie Night Experience 🍿🎥
37.7K viewsSep 7, 2024
TikTokmama_mila_
Three-year-old Mila is facing a disease so rare, she’s 1 of just 8 children in the U.S., and 1 of only 80 in the world, diagnosed with it.It’s called SPG50, a progressive neurodegenerative disorder that, without treatment, will take away her ability to walk, talk, smile… and eventually, her life.There is hope. A gene therapy drug has already stopped the disease in other children. In the first two phases of the clinical trial, kids who once faced paralysis by age 10 are now walking, reading, and
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Three-year-old Mila is facing a disease so rare, she’s 1 of just 8 children in the U.S., and 1 of only 80 in the world, diagnosed with it.It’s called SPG50, a progressive neurodegenerative disorder that, without treatment, will take away her ability to walk, talk, smile… and eventually, her life.There is hope. A gene therapy drug has already stopped the disease in other children. In the first two phases of the clinical trial, kids who once faced paralysis by age 10 are now walking, reading, and
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FacebookKaitlyn Ross
Day 4 of Mila’s stem cell treatment. I always promised I would share the good and the hard — so here is today’s honest update. After the injection, we noticed a fruity smell on her breath. The next day she vomited, and by day 3 she was much more tired than usual. Veins were tough today. Two attempts, with the final IV placed in her ankle. Not easy to watch, but she pushed through like she always does. The clinic told us mild side effects can happen as the body processes the cells, but of course
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Day 4 of Mila’s stem cell treatment. I always promised I would share the good and the hard — so here is today’s honest update. After the injection, we noticed a fruity smell on her breath. The next day she vomited, and by day 3 she was much more tired than usual. Veins were tough today. Two attempts, with the final IV placed in her ankle. Not easy to watch, but she pushed through like she always does. The clinic told us mild side effects can happen as the body processes the cells, but of course
288.7K views3 months ago
FacebookMila Johnson
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