Cure for Kalika

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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

What is Rett Syndrome?

Rett Syndrome is serious lifelong neurological disorder that is caused by random mutations in a gene called MECP2. Diagnosed almost exclusively in girls, symptoms typically appear in toddlerhood. 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.

Despite the debilitating nature of the disorder our girls are so much more than a laundry list of symptoms. Their beauty and their strength inspire and motivate us.

Rett Syndrome stands apart from other neurological disorders due to the dramatic reversibility of symptoms in animal models. Our confidence that Rett Syndrome is curable guides our every decision.

Learn more about Rett here.

Who is RSRT?

The Rett Syndrome Research Trust (RSRT) was launched in 2008 with a singular goal: to drive research to a cure for Rett Syndrome and related MECP2 disorders. As one of the few neurological disorders to demonstrate dramatic symptom reversal in the lab, Rett Syndrome has captured the attention of the world's premiere university and pharmaceutical industry scientists. RSRT is operating at the nexus of this activity, leading and advancing the research agenda.

In 2017 RSRT launched a three-year, $33 million strategic plan called Roadmap to a Cure. The plan prioritizes four scientific approaches that attack the disorder at its genetic core and offer the possibility of a profound reversal. Roadmap to a Cure is the only comprehensive plan ever developed by any organization anywhere to advance a cure for Rett Syndrome.

By funding the most Rett research worldwide, $58 million since 2008, we strive to put ourselves out of business as soon as possible.

Learn more about RSRT here.

Supporters (33)

  1. Jasmine Bacon 
    3 months ago
    $10
  2. Anonymous 
    3 months ago
    $250
  3. Anonymous 
    6 months ago
    $100
  4. Anonymous 
    7 months ago
    $50
  5. Anonymous 
    7 months ago
    $20
  6. Anonymous 
    7 months ago
    $50
  7. Madhusmita Bora  
    7 months ago
    $100
  8. David Malinowski 
    7 months ago
    $100
  9. IRENKA DOMINGUEZ-PARETO 
    7 months ago
    $20
  10. Tairan Qiu 
    7 months ago
    $25
  11. Gloria Park 
    7 months ago
    $250
  12. Paola De Santo 
    7 months ago
    $35
  13. Kuo Zhang 
    7 months ago
    $50
  14. Victoria Hasko 
    7 months ago
    $100
  15. Anonymous 
    7 months ago
    $20
  16. Alexis Martin 
    8 months ago
    $25
  17. Mayssa Dabaghi 
    9 months ago
    $100
  18. Benjamin Haddad 
    9 months ago
    $50
  19. Jessica Flores 
    9 months ago
    $25
  20. Anonymous 
    9 months ago
    $100
  21. Xinyi Meng 
    9 months ago
    $3
  22. Melisa Cahnmann 
    9 months ago
    $50
  23. Melisa Cahnmann 
    9 months ago
    $50
  24. Carolina Caetano 
    9 months ago
    $30
  25. Nikhil Srinivasan 
    9 months ago
    $25
  26. Emily Sahakian 
    9 months ago
    $25
  27. Peng Qi 
    9 months ago
    $20
  28. Allyn Carey 
    9 months ago
    $25
  29. Deepak Mishra 
    9 months ago
    $20
  30. Suman Barat 
    9 months ago
    $3
  31. Vicki Hale 
    9 months ago
    $25
  32. Lihi Ben Shitrit  
    9 months ago
    $50
  33. Nupur Kittur 
    9 months ago
    $50

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