A Cure for Cloe

  • Description
  • FAQ
  • Comments
  • Supporters

Cloe was born on 8th February 2014. For a time she grew up normally and we were so happy to be called mum and dad for the first time in our lives. But when she was 19 months Cloe started to move less and talk less. This worried us because up until that time Cloe was very active and especially liked to dance. But she continued to get worse. After many doctor visits she was diagnosed with an "MECP2 gene mutation", the cause of Rett Syndrome, a severe neurological disorder that afflicts mostly girls.

We could not believe it. Every day we hoped it was a mistake; but the doctors were right. Cloe started to have more and more difficulties. She could not make even single steps, or say any of the lovely words that she used to say. Now she has trouble breathing and sleeping normally. Rett Syndrome is stealing everything from her.

But we have started to fight against this. This is why we are doing a fundraising campaign for the Rett Syndrome Research Trust, a non-profit that is spearheading much of the research on this rare but devastating disorder. We need your help. Please, share and donate to save Cloe and other girls and women with Rett Syndrome.

Scientific research on Rett Syndrome has made great progress recently. Rett is caused by a mutation that happens randomly and it can happen to anyone, so while it is not preventable it may well be curable. In fact, its terrible symptoms have been reversed in mouse models. Researchers are working very hard to translate this result to girls and women with Rett Syndrome. Every donation made to our campaign will go to research to help accomplish this and change our daughter’s life and the lives of more than 350,000 others with this devastating disorder.

God bless you all!

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.

Supporters (4)

  1. Edrian Colina 
    3 years ago
  2. Katie Bowers 
    3 years ago
  3. Helisa Muhaj 
    3 years ago
  4. Tim Freeman 
    3 years ago

This is a unique website which will require a more modern browser to work!

Please upgrade today!