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After a long journey of doctor appointments and second opinions she was diagnosed with batten disease in march 2015.
Charlotte gray batten png. The charlotte and gwenyth gray foundation exists to improve and save the lives of all children impacted by batten disease and other neurodegenerative disorders. The charlotte and gwenyth gray foundation in march of this year both of our daughters charlotte and gwenyth were diagnosed with late infantile ncl batten disease cln6. 9 717 likes 6 talking about this 2 were here. New parents gordon and kristen gray were overjoyed by every coo every smile and every milestone reached by their cheerful young daughter charlotte.
Founded by two parents committed to finding a cure for batten disease to save the lives of their daughters the foundation recognizes firsthand the day to day challenges of living with a. Tell us more about this diagnosis. In 2015 charlotte then age 4 and gwenyth then age 2 gray were diagnosed with batten disease. Kristen both of your daughters charlotte and gwenyth gray have been diagnosed with batten disease a rare neurodegenerative disorder.
While a new drug approved thursday. Doctors explained that there was no cure nor any treatment options for this rare neurodegenerative disorder which would leave the girls blind immobile cognitively impaired and ultimately gone between the ages of 6 and 12. Curebatten los angeles california. Apr 27 2017 at 8 53 pm charlotte and gwenyth gray seen here in 2015 with their parents gordon and kristen gray have a rare disorder known as batten disease.
The charlotte and gwenyth gray foundation to cure batten disease. Meet a family whose two young daughters were born with a very rare brain disorder called batten disease. Because so few suffer from this presently incurable and fatal disease there has been limited research focus and funding. Doctors told the parents there was a 25 percent chance that their.
8 852 followers 359 following 158 posts see instagram photos and videos from the gray foundation curebatten.
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8 852 followers 359 following 158 posts see instagram photos and videos from the gray foundation curebatten. Doctors told the parents there was a 25 percent chance that their. Because so few suffer from this presently incurable and fatal disease there has been limited research focus and funding.
