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Our world turned upside-down in October when our two-year-old daughter, Rosie, was diagnosed with a rare, fatal disease called metachromatic leukodystrophy (MLD). MLD is a rapidly-progressing disease that robs children of their ability to move, speak, and eat by destroying the protective lining of their nerves. Rosie's doctors anticipate she will lose all motor function before Fall 2026.
This illness is a devastating blow to our family. Rosie fills our home with love and laughter daily as she plays with her brother Charlie, sister Amelia, and new baby sister Lily. She is so joyful and the biggest tease. We are determined to preserve her ability to engage with those she loves and participate in the things that bring her joy for as long as possible.
For Rosie, this will require highly specialized equipment that isn't always covered by insurance - and when it is - it's nearly never approved on a timeline that is fast enough for Rosie's shifting needs.
We expect to meet Rosie's out-of-pocket maximum ($8,000) in medical bills each year. This added expense stretches finances for our family of six and limits our ability to cover the extra equipment and activities that will improve Rosies short, and precious life.
We hope to use this GoFundMe to pay for things that will give Rosie the best quality of life possible. Here is a list of some of what we hope to give her:
- An AWD wheelchair-accessible van ($70,000+), for safe family transportation as Rosie’s needs grow.
- Family pool membership ($1,000/year). Floating in water helps relieve Rosie's pain, and allows her to move and play with her siblings.
- Inspired By Drive PPod Positioning Chair ($1,900), to help Rosie sit comfortably at home during family time.
- Drive Medical Bradshaw Junior Medical Bed ($3,700 after insurance), to help us reposition Rose throughout the night, relieving muscle spasms and preventing pressure sores.
- Tobii Dynavox Eye Gaze Device (around $2,000 after insurance) - This will help Rosie communicate when she loses the ability to speak.
- Huckleberry Hiking Cascade Tandem Hiking Cart ($2,500), to help Rosie join her siblings on outdoor adventures that aren’t wheelchair-friendly.
- Leckey Squiggles Pediatric Stander and Activity Tray ($4,500), a “standing wheelchair” will help Rosie stretch and reduce muscle spasms. It will be one of the only places she will be able to experience the world at eye-level.
Please know that your contribution means the world to us as we all help Rosie endure MLD. Additionally, we welcome your ideas for other ways to help Rosie. Please reach out to us if you think of something we should pursue.
Every donation, share, and like is a step toward providing Rosie the comforts that she deserves and needs through this ordeal. We are committed to paying your generosity forward by donating all of the equipment we are able to purchase for Rosie to another child with special needs in the future.
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