A Miracle For Carmen

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On July 22, 2016, my world changed. This is the day my worst fear was realized. This is the day we received the diagnosis- Rett Syndrome. This is the day my life priorities changed. I'm not just a regular father anymore. My new goal in life is to help find a cure for my daughter Carmen.

My daughter was born May 9, 2013. For the first 8 months, everything was as a normal baby, she could hold toys, feed herself cereal bits, and she was constantly babbling, trying hard to talk and communicate. At around 9 months, I woke up to find Carmen struggling to breathe and her face was slightly blue. We rushed her to the ER where she stayed for a month. We found out she had Chiari Malformation, which required decompression surgery. The surgery basically consists of modifying the skull and some tissue around the base where the spinal cord meets the brain. She started to regress with her hands, she stopped babbling as much, she never learned to crawl or walk. We tried every type of therapy over the next 2 years to help her improve, with not much success. We knew something was wrong but we were praying every day that it wasn't something serious. Then came the day that changed our lives. The doctor's appointment on July 22, 2016 that explained the diagnosis of Rett Syndrome. The day I promised Carmen, I'm gonna fight any way I can to see your life improve. Through all this adversity, she still has a smile that is unbelievable. She is so amazing. I would give anything to swap abilities with her. Because of her, the meaning of LOVE is so much more powerful.

We do not want to see Rett Syndrome rob Carmen of more than it already has. Time is of the essence. We need to help Carmen and all the other girls of Rett Syndrome beat this terrible, debilitating condition. Research has already gotten them so close to a cure, we need to push hard for our girls and women. Please consider donating for Carmen's Miracle!



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 the development of treatments and cures 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.

By funding the most Rett research worldwide, $35 million since 2008, we strive to put ourselves out of business as soon as possible.

Learn more about RSRT here.


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