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
| 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 |