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.
AASHI'S EARLY CHILDHOOD YEARS....
Aashi’s name means "smile." And true to her name, she filled our lives with smiles from the day she was born. With her boisterous energy, she was a natural runner, jumper, and climber. She defined the true meaning of life for us thanks to her little jumps on the sofa, her tiny voice full of happiness, and her ability to win everyone's heart. She loved going to swimming class, playing with her friends and family members, and going to the park. She was a social butterfly and loved to say hi to everyone. One of her most favorite things to do was looking at all the toys in Target.
OUR LIFE WAS PERFECT...
We are proud of many things in our life but, for us, nothing beats being the parents of our perfect little girl. We felt blessed in having a daughter who gave our lives such a loving focus and brought us pure joy. Like any parent, we looked forward to watching Aashi grow into a successful, exuberant adult.
...THEN WE NOTICED
When she was three and a half, we noticed that Aashi had started wiggling a little while walking. Initially, we weren’t very concerned, thinking it was just a phase she was going through. But as time passed, we were very concerned to notice that her gait was getting worse and walking was becoming increasingly more difficult. She struggled to run or jump. We started searching for answers as to what was happening to our darling little daughter. Within just a few months, Aashi started having seizures, and initially we were advised that epilepsy was the cause. As time passed, her speech and cognitive levels also declined along with her motor skills. We feared that something more serious than epilepsy was going on.. As it turned out, we were right.
DIAGNOSIS
In December 2016, when Aashi was four and a half, after almost a year of tests and consultations with various doctors and specialists, we received an awful diagnosis. Our little Aashi has Batten disease, a rare and fatal neurodegenerative disease. On hearing the news, our hearts sank, our hopes were dashed, and our lives changed. Our dreams for Aashi were shattered when we discovered what Batten disease could do to a child.
After the initial shock and disbelief, we pulled ourselves together, and committed ourselves to doing everything possible to help find a cure to beat Batten!!! Please, help us make this happen for Aashi and other children around the world who are facing this fatal disease.
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.
