Amazing Aubrey and Friends

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Aubrey's Story

Aubrey was born a beautiful healthy baby girl on March 15th 2014. She progressed just like any other baby until about 9 months when she hadn't begun to crawl. We were assured by doctors not to worry that some children skip crawling and go straight to walking. By her first birthday she still hadn't crawled or walked so we expressed our concerns again and were assured that all was ok "she was just a little delayed".

Aubrey started Physical Therapy and learned to crawl. Then at 18 months the 15-20 words Aubrey spoke with meaning disappeared. Some of Aubrey's other skills became less consistent and we knew something was wrong.

After months of therapies, specialists, tests, and hospital stays we were finally given an answer. On May 10th 2016 Aubrey was diagnosed with Rett Syndrome.

So we have decided to pick ourselves up by the bootstraps and take action. We now know we are not alone. From what we can gather from our research is that there is no cure BUT they are close. Since this is such a rare condition, there isn't a whole lot of funding. The best way to help the cause is to create awareness and raise as much money as we can to fund research. We want to act fast and start getting people involved. We will take action and kick Rett's butt!

Please share this story and the stories of all the other families affected by this condition.

Help us to get our daughters back.

Help them laugh, walk, and talk again.

Help be their voice.

Thank you all,

Thank you Aubrey for being our daughter. You are truly Amazing.

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 (14)

  1. Dianna Bourn-Jennings 
    5 months ago
  2. Katie Golan 
    5 months ago
  3. Joy Lohr 
    7 months ago
  4. Virginia Douglas 
    8 months ago
  5. Greg Degleffetti 
    1 year ago
  6. Mary Jones 
    1 year ago
  7. Sarah Jones 
    1 year ago
  8. Catherine Kleber 
    1 year ago
  9. Melissa Macklin 
    1 year ago
  10. Jennifer Noga  
    2 years ago
  11. Jami Sauerwein 
    2 years ago
  12. Sandra Likar 
    2 years ago
  13. Mark Bailey 
    2 years ago
  14. Edrian Colina 
    2 years ago

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