A Cure for Shannon

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Shannon was born a bright, beautiful and seemingly healthy baby girl! She met all of her milestones the first year. During her second year things slowly began to change. We noticed she would do a lot of repetitive hand movements and flipping through phone books. She became increasingly difficult with screaming spells and sleeplessness. My aunt who worked with handicapped children noticed something was wrong, but I just wouldn't hear of it!

Then my babysitter had a nurse that would come and visit her children as they had health issues. While observing Shannon she noticed she was delayed in speech and cognitive function. She shared her concerns with me and the nightmare began! I took Shannon to a pediatrician who admitted her to hospital right away. By the end of the week they knew something was very wrong. EEG confirmed she had petite mal seizures and within a short period the diagnosis of Rett Syndrome came. I was devastated! My family was devastated! I was told she will be like a baby the rest of her life, needing to be fed and diapered!

We all never thought there would be a cure, we were told there was none.  But to my ecstatic joy I stumbled across the movie Rett: There is Hope! I sat in amazement as I watched and I especially cried when I saw that little mouse run after the disease was reversed in him! Now that I know there is hope I am totally on board and want to raise as much as possible for the research to help get this to a cure stage for our girls! It's a miracle Shannon has made it this far, she is 30 now! She almost died so many times from this disease!

Time is running out for her, and other women with this disease! Will you help make Rett History for my daughter? Please consider helping!

Thank you and God Bless you,

Laurie Ann Hacker

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 (16)

  1. Laurie & Glen Hacker 
    4 months ago
  2. Danielle Muller 
    6 months ago
  3. Barb & Don Thomas 
    8 months ago
  4. Lori Ann Hill 
    9 months ago
  5. William Vialardi 
    10 months ago
  6. Laurie & Glen Hacker 
    10 months ago
  7. Carol Lindsay 
    10 months ago
  8. Michele Holmes 
    10 months ago
  9. Anonymous 
    10 months ago
  10. Lex Haga 
    10 months ago
  11. Don & Brenda Scott 
    10 months ago
  12. Nemx Skilled Trades Nemx Skilled Trades 
    10 months ago
  13. Lise Betteridge 
    10 months ago
  14. David Bowman 
    10 months ago
  15. Genevieve Ross 
    10 months ago
  16. Anonymous 
    11 months ago

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