This is Sophia.
A daughter, a sister, a friend, an athlete and a scholar.
A 12 year old girl who is wise beyond her years. A girl who lights up every room she walks in to! She is also a girl who, unfortunately, has been suffering from headaches and migraines (like a lot of people). This past year, her headaches have turned in to complete misery. Pain, dizziness, blurred vision, nausea, weakness, fatigue, shortness of breath.. you name it and this kid deals with it on almost a daily basis. It has gotten to the point where it is debilitating.
She has been so strong, forcing herself to be “normal” as much as possible. She participates in family activities, pickleball, swimming, hanging with friends… and then paying the physical price for it for days afterwards. Often texting her Mom- “Mom, I feel so bad” “I feel like I am dying”.
In April 2025, after tests and a few specialists later, Sophie was diagnosed with Chiari Malformation 1.5: this is a progressive form of Chiari Malformation 1, a condition where brain tissue protrudes through the skulls base, going in to the spinal canal. Sometimes this is an “incidental finding” meaning found by accident when checking for other things etc. because it is often asymptomatic (no symptoms), unfortunately for Sophia, that is not the case.
The treatment for this condition is surgery. She will undergo an invasive brain surgery to permanently remove a part of her skull to allow more space for the brain tissue, along with removing the first vertebrae.
Recovery is extensive. She will first be in ICU before moving to inpatient recovery for 5 days. She will miss weeks of school, be physically restricted for months, and in pain and discomfort for a while.
Everyone is trying their best to be positive, thankful that it is not worse, focusing on the outcome of improving Sophia’s quality of life, allowing her to be a kid again!
Our main concern is Sophia’s health. However, a major reality of our circumstances is: surgery and the recovery process will be expensive. While her Dad has great insurance, it covers only a fraction of what is to be expected. The family would be beyond grateful for any and all funds raised on Sophia’s behalf to help ease the financial burden of this unfortunate and unexpected situation so that they can focus on what matters the most!