Madison was born with a rare type of Congenital Femoral Disorder known as Proximal Femoral Focal Deficiency. It is a rare condition causing the top of the femur/hip joint to never develop and the cause is unknown. It affects the femur, hip joints, and can affect all other joints, and sometimes bones, in the lower extremities. Our Maddie just so happens to have both femurs affected, both her knees, both ankles, and we recently found out her right fibula is slightly shorter than her tibia causing the outward rotation of her ankle.
When we found out in the beginning, UW referred us to Seattle Children's. (June 2019). Her X-rays showed her right was worse than her left and we were told there were no surgeries possible and that she would never run/jump in her life. This devastated us until we learned of a world renowned provider in Florida who gave us so much hope.
Since then Maddie has had almost 10 surgeries and is scheduled for her next leg lengthening on her right femur, as well as correcting the curving on the bottom of her right femur, on January 13th, 2026.
This procedure requires Maddie and mom to live in Florida, away from our family, for approximately 3 months. She will then have Physical Therapy 5 days a week and regular check ups with her surgeons (Dr Miller and Dr Shannon). After she finishes, she will come home with her external fixator on and we will have monthly X-rays until her bone is hardened. Once it is, we will fly back to Florida for fixator removal!!
These funds are being raised to help cover all medical expenses (including medications, medical equipment/supplies, and diagnostics), housing/lodging, groceries, airfare, gas for vehicle driving to appointments, therapies ($300 per visit & insurance only wants to cover 20 out of the almost 120 we need for the year), medical necessities, loss of wages for mom due to having no sick or leave time from missing work, and other financial issues that may arise.
We appreciate anyone who is willing to donate!! Donations can also be accepted via Venmo if you prefer that or any other means.
Other ways to help is supporting Madison on her journey via letters to our hospital housing (I will provide the address once we leave) and also supporting her twin brother, baby sister, and dad as we (mom and Madison) will be separated from them for months.
**Anything extra raised will be saved for future surgeries, as her disorder requires multiple surgeries during her childhood.