Trinity Rose Foundation

Our Story
OUR STORY

Trinity's journey has been a difficult one during her first three years.  After discovering that she has a very rare, blinding disease called Familial Exudative Vitreoretinopathy, Trinity has already had two significant surgeries and almost a dozen trips to doctors in Detroit and the Cleveland Clinic for exams while under anesthesia.  Through most of this journey, Trinity has smiled, laughed and warmed the hearts of all who get to know her. 

Familial Exudative Vitreoretinopathy (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.  It can manifest itself in ways ranging from a variety of conditions that cause retinal detachment to glaucoma to cataracts.  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.  Fortunately, it appears to stop this pattern after the children mature into their early twenties.

FEVR is a genetic disease and while a cure appears years away, a number of dedicated doctors and researchers have started to locate the genes that can cause the disease.  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 three-year olds.  She's in pre-school now and works and plays like her friends, her brother and her sister.  While her vision issues might delay some cognitive development, she's already displaying the desire to learn more every day.  You will be hard pressed to find a more precocious, 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.