Brutally Battens Sofi's Journey
Sofi has been diagnosed with a neuro-degenerative disease that causes loss of sight, hearing, motor functions, and ultimately brain function. CLN3 Batten Disease.
She started her official journey in 2017 at the age of 7. It has been almost a 2 years since the onset of symptoms and Sofi is still going strong. She is a fighter like her Iraqi War Veteran dad and isn't taking this lying down. We have burned through all our savings and reached the limits of our insurance but nothing will stop us from getting her the treatments and aids she needs for daily living.
The first stages of the disease, degradation of sight and hearing, is what started us on our journey and we are no where near the end. The most we can do is treat symptoms as they come and do what we can to make life a little easier for her to remain independent as long as possible.
We live about 4 hours away from her wonderful doctors, but we make the 4 hour one way trip at least once a month for check ups, follow ups and meetings to go over her care plan. Our goal is to get enough funding to move to a house that will meet Sofi's future needs and cover at least a year of her medical. That seems impossible but we have faith that this can happen. I can't think otherwise because Sofi deserves the best.
Here are a few sites to help you learn more and understand what lies ahead for our family.