Together for Sunčica’s Miracle

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Sunčica is a beautiful girl with the most beautiful blue eyes you can imagine. She is an angel. She loves music, she likes cartoons,  jokes, she likes to laugh with her sister Iva and her brother Vuk. Since 2012 tracheostomy surgery, she no longer has a voice. She was diagnosed with Rett Syndrome, which affects almost exclusively females, in 2007. It was a difficult time for me and my husband. It was a time of crisis, the search for solutions, and the adaptation to the new situation. Since then, our struggle with the severe illness of our girl has not ceased. Despite all the exercises, the medication, the disease continues to progress. For two years she was in intensive care at the hospital on a respirator. Now at 12 years old, she has weak lungs, a tracheostomy tube, has scoliosis, muscle atrophy, and two fractures. But we still believe in miracles. Research is progressing, and doctors and scientists are very close to treatments and maybe even a cure that will raise our girl again to her feet.

The truth is, we need your help to make Sunčica and so many other children with Rett Syndrome healthy. Only together can we make a miracle. Thank you very much.

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 (3)

  1. Anonymous 
    7 months ago
  2. Anonymous 
    8 months ago
  3. Anonymous 
    10 months ago

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