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Speechless for Rett in 2020

A campaign by: Matthew & Anna Heimburger
33 Donors
Raised Percent :

36.21% Funded
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Believe it or not, our sweet Lucy is twelve this year! She is doing well in many ways: she loves school, she works hard at her various therapies, and her peaceful, loving, and grateful attitude not only keeps her centered in these difficult times, but inspires us to do the same. We’ve been living with the diagnosis of Rett Syndrome for 10 years now, and we’ve gotten so used to the ups-and-downs of the disease that it usually takes something new to remind us how difficult Lucy’s life can be. Besides the loss of speech and ability to use her arms and legs, over the years we’ve dealt with pain, seizures, reflux, constipation, incontinence, bruxism, breath holding, muscle contractures, loss of appetite, and even loneliness. The severity of each of these things has ebbed and flowed, depending on her stage of development, the day, or even the hour. This year our biggest challenge comes from scoliosis—the severe curvature of her spine and pelvis. For this she is receiving aquatic therapy, cranio-sacral massage, rolfing sessions, and time on inversion boards and vibration platforms, all with the hope to avoid major surgery. Rett Syndrome doesn’t cease, so neither do we!

With such a relentless pathology, you’d think Lucy would be sad and bitter. She isn’t. She is a beautiful pre-teen with an amazing ability to balance acceptance with optimism. She wakes up each day ready for whatever comes. What seems to be coming now are meaningful treatments for Rett Syndrome, and very real possibilities for a cure. Covid-19 put most Rett-related programs on hold, but we’ve learned recently that while clinical trials must wait, the research continues to move forward quickly. “Speechless for Rett” is an opportunity to acknowledge a central feature of Rett Syndrome: loss of speech, while collectively doing something about it. We’re asking you, our family and friends, to contribute to the Rett Syndrome Research Trust—if you are able, and at whatever level you feel you can. And to spread the word! On October 24th, at 12 noon Mountain Standard Time, we will all go “speechless” for one hour to honor Lucy and all the girls (and some boys) who suffer from Rett Syndrome. Please join us!

The Heimburger Family

Make a Donation

Donation Amount
Minimum amount is $ Maximum amount is $100000
Name Donation Amount Date
Jeff Dance $100 November 15, 2020
David Dibble $30 November 10, 2020
Tom Dance $250 November 01, 2020
Heather Rasband $50 October 29, 2020
John Heimburger $1,000 October 28, 2020
Marcia Ivie $50 October 27, 2020
Jamie Walker $50 October 27, 2020
eri saito $100 October 27, 2020
Elisa Warford $100 October 27, 2020
Anonymous $100 October 26, 2020
Zaida Rothwell $250 October 26, 2020
Susan Williamson $50 October 26, 2020
Luke Bodensteiner $50 October 25, 2020
Amy Luetgert $50 October 25, 2020
C. Heimburger $25 October 24, 2020
Angela Webb $50 October 24, 2020
Anonymous $50 October 24, 2020
Amanda Christensen $25 October 24, 2020
JeVonne Tanner $50 October 24, 2020
Michael Jablonski $50 October 24, 2020
Bruce Moller $100 October 24, 2020
Ragnhild Davis $50 October 24, 2020
Michael and Christie Downing $100 October 23, 2020
Anonymous $50 October 23, 2020
Kelly Estabrook $0 October 23, 2020
Anonymous $100 October 23, 2020
Marielle Melling $5 October 22, 2020
Anonymous $40 October 22, 2020
Anonymous $50 October 22, 2020
Jeana Kelly $20 October 22, 2020
Marshall Tate $1,000 October 22, 2020
Diane McDonald $250 October 22, 2020
Tim Freeman $100 October 21, 2020