It’s hard to find your voice when you’re told your little girl will lose hers
It’s hard to find your voice when you’re told your little girl will lose hers…
We are Cody and Jami Wood…but we want you to meet our little girl, Mila, because to have met her, is to love her. Just barely 3-years-old, Mila is a bright, sassy, strong-willed, and our ray of sunshine. She loves singing, ‘feeding’ her teddy, and is Ms. Rachel’s biggest fan. She is also a little girl facing an uncertain future.
Before you continue reading, we want you to know, this is not entire Mila’s story. With your help alongside the rest of “Mila’s Miracle Workers” (if you’ve read this far – you are part of that club. Thank you!), this is just a long and terrifying chapter. We will work together to give her a happy ending.
Over the years, Mila fell behind her twin sister, Elise, in ambulation and mobility. She was diagnosed with hypotonia (low muscle tone) at a young age. Despite many specialists’ visits, we were often told not to worry - “she’s a twin, she was a preemie, she’ll walk when she’s ready.”
Although we wanted to believe these words of hope, deep down we knew something wasn’t quite right. After months of advocating, she was finally given a comprehensive genetic test. On August 8th, 2025 we received the results that turned our world upside down.
Mila's test results showed gene mutations indicating Spastic Paraplegia type 50 (SPG50), an extremely rare and progressive neurodegenerative disorder with a life limiting prognosis. She is 1 of 100 worldwide. 1 of only 8 in the entire United States. Without intervention, the disease will progress. It will take her mobility, her voice, her smile, her mind, and ultimately the life every parent dreams of for their child.
With that crushing news, we found hope through the advocates on Jack’s Corner.
Gene therapy. A clinical trial was approved, and this therapy has successfully treated 6 kids over the first two phases. Currently, additional doses are quite literally sitting in a freezer; the next 8 children cannot be selected for the trial until funding is secured.
Time is not Mila’s friend, and if the FDA doesn’t approve additional treatment outside of this study, your donations could be Mila’s last chance. As of today, Mila has already begun showing the first set of symptoms that this disease brings, but every day that passes without this treatment is worse than the last. We are hopeful she can receive this gene therapy before SPG50 causes irreversible damage.
We are taking our grief and anger and putting it towards the mission of funding this next trial. We can’t do this alone.
Your support will help this clinical trial move forward. Mila is not just an ultra-rare disease. To us, her twin sister, and her two older brothers, she is everything and we will fight for her. We beg you to fight with us. Your support could help save our little girl. Help us rewrite her story. Help us give her a happy ending.
MILA’s Story
meet Mila
Miss Mila is a sweet toddler with a big personality. It’s incredibly difficult to be in a room with her and not smile. She’s animated. She’s always singing. She’s inquisitive. Her laugh is contagious.
She loves to play pretend and doesn’t appreciate when someone in our house breaks character. Whether she’s force feeding us food way too quickly and insisting we “mm say yummy!” or she’s Dr. Mila and we know we aren’t leaving her until she’s given what she deems a proper checkup; her little mind is always full speed ahead. She’s incredibly smart and when she gets tired of answering us with shapes and colors, she loves to flip the script and ask us “What’s this?” Just so she can give us, a bit of a sassy, “Gooooood job!”.
Mila has had to work harder than most children physically. From learning to roll over, to sit independently, to crawling she has handled each of these milestones with persistence and determination. She took her first few steps recently and quickly squealed “I did it!” And you can often find her in her walker repeating “walk, walk, walk!”. Our Mila is a force. A fighter. Our Mila deserves every tool available to her to fight her battle with SPG50.