The Isla Edwards Research Fund

Our Story

Our sweet Isla was born on September 1, 2013 and every day since then she has been an absolute ray of sunshine to every person who crosses her path. She enjoys swimming, dancing, singing, and being the life of the party. She is was born to be one of a kind, and she certainly is (and then some.)

On August 12th, 2021 our lives changed forever. After genetic testing to determine why Isla’s eyesight was strained we received news we were not at all prepared for. Isla was diagnosed with a rare genetic condition; CLN3 Batten Disease.

Batten disease is a rare genetic disorder of the nervous system. CLN3 symptoms begin with childhood macular degeneration and blindness, followed by seizures, dementia, ataxia, cognitive decline, loss of motor skills and the ability to walk, talk and communicate. There are different forms of the disease but all are fatal, usually by the late teens or twenties. There are currently no approved treatments and there is no cure.

Isla’s diagnosis was given extremely early compared to other CLN3 Batten children who often don’t get answers until after they have already lost vision, physical abilities, and suffer mental decline. We consider this early diagnosis to be a blessing and we are determined to keep Isla as strong and healthy as possible while we fight to find our cure.

We have chosen to partner with Beyond Batten Disease Foundation to help aid in the research and development of potentially life saving treatments for children with Batten disease. Since day one of Isla’s diagnosis this organization has been incredibly supportive, informative, and positive. By working together the BBDF community has made great strides in funding critical research for this rare disease. With the help of BBDF, our community, and gracious donors who help fund this research, we know that Isla’s future will be just as bright as she is.

Beyond Batten Disease Foundation was founded in 2008 to eradicate juvenile Batten disease by raising awareness and funds for medical research. Beyond Batten’s strategy brings together other affected families to connect communities and resources to achieve the goal. Bind Up Batten is partnering with BBDF to find a cure for juvenile Batten disease for Charleston and hundreds of other children.

The Be Project is a $6 million campaign to fund the first-ever treatment for juvenile Batten disease. Your contributions are making a difference!