Trinity’s journey has been a difficult one during her first eleven years. After discovering that she has a very rare, blinding disease called Familial Exudative Vitreoretinopathy (FEVR), Trinity has already had numerous surgeries and dozens of trips to specialists in Detroit and the Cleveland Clinic.

Through most of this journey, Trinity has smiled, laughed and warmed the hearts of all who get to know her.

FEVR is a rare genetic disease that is believed to impact just 1 in every 90,000 births. With so few suffering from this impairing disease, research and development dollars are difficult to come by.

Today, only the symptoms of FEVR can be treated and the disease can present a range of issues for those afflicted. Tragically, FEVR can lie dormant for years and, just as one might think they are getting used to the stability and conditions they have grown accustomed to, the disease might then aggressively reappear, at times taking sight from these children again and again.

FEVR is a genetic disease and while advancements have been made, a cure appears years away. A number of dedicated doctors and researchers have started to locate the genes that can cause the disease and great strides have been made. However, further research is needed and this is why we have started the Trinity Rose Foundation. Your help can go a long way to helping these doctors as they seek the funding to find a cure.

Trinity is developing emotionally and, outside of her sight issues, physically like most eleven-year olds. And while her vision issues might delay some cognitive development, she’s performing very well in her main-stream school and continues to display the desire to learn more every day.

You will be hard pressed to find a more driven, more engaging little girl than Trinity Rose. If you get to know her, you will already find a caring, giving little girl who, we are certain, will inspire others the way that she has inspired us.