Virginia’s Village

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After a perfectly normal pregnancy, Virginia Guthrie Lang was born May 20, 2014. She was beautiful, healthy, and an amazing addition to our sweet family. Her big sister was so happy to have her and so were we. It wasn't until we were home and her feedings weren't going well, she was turning blue, and after many frustrating appointments, she was given a feeding tube. This was the beginning of a long 2 years of developmental delays, genetic testing, and uncertainty. After a Today Show feature about a little girl with Rett Syndrome, we called genetic counselor to confirm that this was something we had tested for and if not if we needed to. She assured me that Virginia did not display the typical symptoms of Rett. After a year of genetic testing with no results, our new insurance approved Exome Sequencing Genetic testing. This gave us the answers we were looking for, but also the painful reality that Virginia had Rett Syndrome.

"Sweet V" as we like to call her, is now 3 and a half years old. She is so beautiful and precious. Somehow without the ability to speak she touches the heartstrings of everyone she meets. She works so hard every day to learn to crawl, walk, and communicate on her Tobii. We have been blessed to have found an amazing school that helps her with all of her needs and to give her the opportunity for classroom inclusion. Our family and friends have helped us build Virginia's Village of support. It is so difficult to imagine that your daughter will never be able to say or do the things that her sister can do. However, there is real hope. Rett Syndrome has been proven in labs to be reversible and curable. Numerous clinical trials are underway to develop treatments that will allow girls with Rett Syndrome to be more functional and Gene Therapy holds the promise of a complete cure.

A cure is almost a sure bet, but we need it NOW. With further funding we can augment and expedite research and give Virginia freedom from Rett Syndrome. We don't want our daughter to be defined by this, but we need your help to make this miracle possible for Virginia and all the other 350,000 girls worldwide by donating to the Rett Syndrome Research Trust (RSRT).

We appreciate everyone's support so much!!

Amanda, Michael, Neely, and Virginia Lang

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 (5)

  1. Matilda Ayala Fousie 
    5 months ago
  2. Penne Lakewood LLC 
    11 months ago
  3. Penne Preston LLC 
    11 months ago
  4. Penne Snider LLC 
    11 months ago
  5. Berkley Pigeon 
    1 year ago

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