Cure for Kalika

A campaign by: Usree & Jonathan Bhattacharya
36 Donors
$2,056.00 Raised
$5,000.00 Goal
Raised Percent :
41.12%

22 Days to go
41.12% Funded
, United States (US)
Share this campaign:

Our baby girl, born Christmas Eve 2015, is the greatest gift we have ever received. She has the most generous, loving spirit we have ever encountered. As she turns three, we are getting to know this deep, complex personality who is at the center of our universe. She loves music (especially Punjabi hip-hop, Bengali children’s songs, and Francophone comptines); books (especially Drummer Hoff and Brown Bear); eating (especially steamed broccoli, fish, beans, and Bengali chicken curry); travelling (her favorite travel spots are Delhi, India, and Marseille, France); and watching Bollywood music videos on TV (especially those of her idol Badshah). Her bright, curious eyes soak in the world, even as her disease, Rett Syndrome (RS), constrains her life in so many ways.

It was at the end of June 2018, when we received this shattering diagnosis. RS “is a serious lifelong neurological disorder caused by random mutations in the gene MECP2. Many children with Rett are unable to speak, walk or use their hands. Breathing problems, feeding tubes, seizures, anxiety, gastrointestinal and orthopedic issues are common” (RSRT, 2018). She was just two and a half, when the nurse told us she would never marry, never go to college, and may not work. Living with this diagnosis for our daughter means not only dealing with the tragedy of the symptoms she has, but constantly feeling the terror of the ones that may visit her someday.

Our daughter’s struggle to speak has been one of the hardest aspects of this disease. The girl who easily repeated “I love you” once has to fight extraordinarily hard now to utter “I.” She still repeats “I love you”, fighting with all her might against her uncooperative tongue and the unrelenting ataxia in her brain. Though she faces tremendous challenges, we realize that she is one of fortunate few: many children with Rett will remain “nonverbal” throughout their lives.

Another aspect of her disease that breaks our heart has been the constant hand clapping, which makes it hard, if not impossible, to develop proper fine motor skills. That means she cannot color or draw, cannot hold her dolls, cannot hold a fork for more than a few seconds, cannot turn a page, cannot hold a book, push a push-toy, hold a cup…basically, do most things her peers can.

While we struggle with all that she cannot do—those listed above, and others, like jumping, walking down stairs unaided, or even walking with ease—we celebrate all that she can do. She dances. She walks. She has enough hand use to play some iPad games. She sings a little. She expresses herself so well through eyes, gestures, and speech. She smiles all the time.

We also celebrate the fact that we know the root cause of this disease, and that scientists have REVERSED its symptoms in mice through a groundbreaking experiment. Today, we’re at the cusp of revolutionary gene therapy: it may be that magic cure that every parent and loved one of someone with RS aches for. RSRT has funded tens of millions of dollars in the search for a cure and we need more support. Please help support them so that those with RS have the chance at a rich, fulfilling life.

Precious Kalika, you are our greatest joy. May you live a long, healthy, and fulfilling life.

-Usree and Jonathan

Donation Amount Minimum amount is $ Maximum amount is $1000
Name Donate Amount Date
Cuiyu He $50.00 December 05, 2019
Jennifer Royal $50.00 December 05, 2019
Anat Florentin $100.00 December 05, 2019
Jasmine Bacon $10.00 December 05, 2019
Anonymous $250.00 December 05, 2019
Anonymous $100.00 December 05, 2019
Anonymous $50.00 December 05, 2019
Anonymous $20.00 December 05, 2019
Anonymous $50.00 December 05, 2019
Madhusmita Bora $100.00 December 05, 2019
David Malinowski $100.00 December 05, 2019
Irenka Dominguez-Pareto $20.00 December 05, 2019
Tairan Qiu $25.00 December 05, 2019
Gloria Park $250.00 December 05, 2019
Paola De Santo $35.00 December 05, 2019
Kuo Zhang $50.00 December 05, 2019
Victoria Hasko $100.00 December 05, 2019
Anonymous $20.00 December 05, 2019
Alexis Martin $25.00 December 05, 2019
Mayssa Dabaghi $100.00 December 05, 2019
Benjamin Haddad $50.00 December 05, 2019
Jessica Flores $25.00 December 05, 2019
Anonymous $100.00 December 05, 2019
Xinyi Meng $3.00 December 05, 2019
Melissa Cahnmann $50.00 December 05, 2019
Melissa Cahnmann $50.00 December 05, 2019
Carolina Caetano $30.00 December 05, 2019
Nikhil Srinivasan $25.00 December 05, 2019
Emily Sahakian $25.00 December 05, 2019
Peng Qi $20.00 December 05, 2019
Allyn Carey $25.00 December 05, 2019
Deepak Mishra $20.00 December 05, 2019
Suman Barat $3.00 December 05, 2019
Vicki Hale $25.00 December 05, 2019
Lihi Ben Shitrit $50.00 December 05, 2019
Nupur Kittur $50.00 December 05, 2019