Update: Thanks to the initial support of our community, our mission to get a gene therapy trial is going to happen. Checkout our team of scientists and learn more about the trial. However, we need to raise $1M very soon to keep this going.
Please DONATE + SHARE today to allow our trial to happen. Give Aashi and children like her a second chance at life!
"Aashi is our 'smile'. Her smile is contagious and eyes are full of dreams. She gets excited seeing everyone and everything around her. Her happiness overdrive reminds us to live life fully each day. "
Aashi was born on June 13th 2012. She achieved all her childhood milestones early. We proudly watched her and enjoyed being entertained by her incredible energy and outgoing nature. At age three and a half we noticed that she started wiggling a lot when walking. Initially, this didn’t raise any major concerns in our minds. As time passed, her gait became worse and walking became increasingly more difficult. She could no longer run or jump. She also developed problems with speaking. Her speech became more slurred. She started to lose her verbal skills. At age four, she was diagnosed with epilepsy. As parents, we began a long arduous search for answers. After numerous tests, in December 2016, Aashi was diagnosed with a rare fatal neurodegenerative disease called Batten disease. Our heart sank; our life changed.
Batten disease is a rare and fatal neurodegenerative disorder that usually begins in childhood. It is the most common form of a group of disorders called Neuronal Ceroid Lipofuscinosis (or NCLs).
The forms of NCL are classified by age of onset and have the same basic cause, progression and outcome. However, the forms of NCL are all genetically different.
Aashi's Hope Foundation is fundraising through Mila’s Miracle Foundation to Stop Batten. All donations will go through their fiscal sponsor, Creative Visions Foundation, a 501(c)(3) nonprofit organization. All donations are tax–deductible.