Everything for Ellie

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On October 22nd Ellie will turn ten! It’s crazy how it seems like yesterday we brought home that tiny, little baby, born at 29 weeks and weighing in at just three pounds. She had spent the first six weeks of her life fighting to grow and thrive in the NICU. Alone. When we met her she was just five pounds with a feeding tube and oxygen. Within a week of us being there every day to hold her and love her she was ready to come home.

She has always fought. First to live and now to live life with and hopefully soon without Rett.

The only thing we want for her birthday is for everyone we know to donate to Rett Syndrome Research Trust. Ellie doesn’t need toys since her hands don’t work to play with them. She doesn’t need clothes because she has plenty and is one of the most stylish girls around. She doesn’t need anything but to be set free from Rett. That’s it. Simple.

I’ve had people say they wish they had enough money to donate to make a difference. Five dollars makes a difference! Ten dollars! Twenty dollars! Don’t buy your Starbucks one day and donate that $5 to Ellie’s page. Don’t buy that nice bottle of wine but instead donate that $30 to Ellie to get her one step closer to the cure. I’ll buy you a bottle of wine!!!

We moved to Colorado for Ellie because first round of gene therapy trials start next year. It’s exciting and terrifying. We want to be with the right neurologist and the right hospital for any trials or drugs that can help Ellie. Gene therapy could be years out from FDA approval depending on how the first round trial goes but that’s years closer than it was. The time is now.

Rett Syndrome Research Trust is who we chose to donate to because they are the ones funding the scientists and researchers to work on the cure. They are as passionate as we are since their girls have Rett as well. Almost 100% of your donation goes directly to the Cure.

So please, PLEASE donate. Please help. Please share her page and raise awareness. Let people know Rett Syndrome has been REVERSED in mice and primates. REVERSED!!! The future is here and it’s happening but we need your help. We need your $5! Your $10! Your $100! For Ellie and all the other girls trapped in their bodies that don’t work. It’s easy to donate and it's secure. And your donation goes directly to what we need. The CURE!

Please help! Please donate to Ellie’s Birthday Fundraiser.

One day she will tell you thank you. She will tell you thank you for fighting for her and never giving up.

One day with your help she will be set free from Rett.


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 (20)

  1. Jenniver Turla 
    2 weeks ago
    $25
  2. Lindsey Parrish 
    3 weeks ago
    $100
  3. Kenneth Donner 
    3 weeks ago
    $50
  4. David Larimore 
    4 weeks ago
    $100
  5. charmaine fritz 
    4 weeks ago
    $50
  6. Pamela Conyers 
    4 weeks ago
    $20
  7. Brandy Thibault 
    4 weeks ago
    $50
  8. Anonymous 
    3 months ago
    $5
  9. Jenny Donner  
    5 months ago
    $50
  10. Kelly Nolan Shafer 
    5 months ago
    $50
  11. Louella Hanson 
    5 months ago
    $50
  12. Christy & Harley Donner 
    6 months ago
    $500
  13. Robert Kaelin 
    6 months ago
    $100
  14. Margaret Connolly 
    6 months ago
    $100
  15. Brian Feiden 
    6 months ago
    $100
  16. Anonymous 
    6 months ago
    $1,000
  17. Kenneth Donner 
    6 months ago
    $50
  18. Lara Lant 
    6 months ago
    $100
  19. Cynthia Mundhenk 
    6 months ago
    $50
  20. Kristin Gellert 
    6 months ago
    $100

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