BENEFITING: Giving Back Fund
Our daughter Mary was born May 19, 2009. Mary was 11 weeks premature and was two-months in the hospital and progressively got better. We knew that Mary was premature in walking and talking abilities but, the doctors attributed it to premature birth, we were told Mary would eventually catch up. At 1 year old Mary had her first MRI, and everything looked fine, at two years old Mary began to walk, and started to catch up with children her age. At 3 1/2 years old we noticed Mary had difficulty walking, and progressively got worse. Thinking it might be her vision we took her to an ophthalmologist, also to an orthopedic specialist. In 2014 we found out Mary was having seizures, three months later her doctors recommended genetic testing, and Mary was diagnosed with late infantile-NCL batten disease CLN6, and we were informed that Mary was the only one that had this rare disease at that time. We were devastated, when Mary was diagnosed with this rare disease. The geneticist told us that this disease was a Neurodegenerative brain disease that it would leave our daughter blind, immobile, cognitively impaired and eventually dead, between the ages of six and 12. The doctors said it was a one in four chance that our son John who is now two years old would be tested positive for the CLN6. When the test results returned we were devastated once again. Johnny has no symptoms at this time. Johnny is a healthy two-year-old boy who loves to play and jump and run with his cousins. My mother-in-law watching TV one night, came across Kristen Gray discussing her children with the same disease as Mary and Johnny. My mother-in-law called me the next morning and told me what she had watched, so I emailed the Charlotte and Gwenyth Gray Foundation, Kristen Gray responded with an email and was devastated to hear our news. She knew exactly what we were feeling. She forwarded our information to the doctors that she was working with. And here we are today on the brink of a miracle, our hopes and expectations that a cure will be found soon, our children's life depends on it. Time is running out we have a small window of opportunity and we are asking for your help to find a cure for this horrible disease by funding this research. Thank you from the Smith family.
All donations are tax deductible and will benefit The Charlotte & Gwenyth Gray Foundation and their mission to cure Batten disease.