week 9: this week i'm gonna... help cure Batten Disease
Charlotte Gray was born December 5, 2010, filling the hearts of her parents, Kristen and Gordon, with the same joy all parents feel. She developed at the pace of a typical baby and toddler, with an early passion for gymnastics, dancing and swimming. However, after Charlotte’s first year of preschool, her parents noticed she had hit a plateau developmentally.
After countless questions and many tests, Charlotte was diagnosed in March 2015 with Batten Disease. The diagnosing geneticist explained that this neurodegenerative brain disease was extremely rare and would leave Charlotte blind, immobile, cognitively impaired, and, ultimately, gone… somewhere between the ages of 6 and 12. Their world shattered, Kristen and Gordon immediately had their younger daughter, Gwenyth, tested and she was given the same grim diagnosis.
Learn more about the Gray's story here:
The Charlotte and Gwenyth Gray Foundation was created to raise an estimated $10 million necessary to fund urgent medical research to save the lives of all children devastated by Batten Disease. Because so few children suffer from this presently incurable and fatal disease (2 to 4 of every 100,000 live births in the U.S.), there has been limited research, focus, and funding. All funds raised will accelerate research in three promising treatment options: gene therapy, cellular therapy, and small molecular therapy.
It was just one year ago that Charlotte began to show symptoms of Batten Disease. She remains strong, happy and constantly smiling, but the Gray family has been dismayed at how aggressively the awful disease has impacted her life. In the past several months, she has started to struggle with walking and talking, and many nights she has trouble sleeping. The family continues to pursue several different therapies to treat her symptoms and make her life easier (such as the hyperbaric therapy pictured here). However, it is a CURE that she, her sister Gwenyth, and so many other children ultimately and desperately need.
Notes for this week:
- Rare Disease Day is February 29th - givetwig is proud to be helping to #curebatten and raise awareness for other diseases with desperate need for research funding
- Our collective givetwig donation will sponsor current gene therapy research efforts
- For further information regarding The Charlotte & Gwenyth Gray Foundation, please check out their website.
- You can show your support for Charlotte, Gwenyth and all kids suffering from Batten Disease with a new #curebatten tee, tank, or hoodie from represent.com/curebatten. Only available until March 1st!
this week i'm gonna donate to The Charlotte & Gwenyth Gray Foundation.