Imagine that you have a beautiful new baby. Call her Lily.
“Can life get any better than this?” you ask. You cradle your newborn. Her new Mama glows.
How exciting it is when your child rolls over in her crib for the first time! How proud you are when she first pulls herself up on the side of the crib! “Mama,” “Daddy,” she says, and, sometimes to the dog, “Come!”
But by the time your child turns two, something is wrong. When she tries to walk, her legs don’t work properly. They don’t bend. She can’t balance herself. For some reason, she stops saying words.
“Mama” is the last word to go.
Soon, you get a diagnosis: Rett Syndrome. A spontaneous genetic mutation on the X-chromosome is causing all this. You read way too much about Rett Syndrome. Your heart contracts.
When your child is three, she has terrible digestive problems. You mix liquid meals every day to supplement her soft diet. And her hands begin to curl, so she can’t use them.
By age 5, she develops breathing problems. Sometimes her muscles freeze and she can’t breathe at all, maybe for 30 seconds. Sometimes she shakes. It’s “pre-seizure activity,” you are told.
By seven or eight, she’s getting heavier to lift. Lily is still pretty, with gray-blue eyes and silky long hair; but she stays thin. She can’t absorb food normally. You manage extra feedings, because by now, you sleep with her at night. Her breathing is labored. You never want to leave, because your desperate love for your child is laced with fear. Rarely, you must leave her, because both you and your spouse work demanding jobs. The fear follows you. You arrange your lives to work mostly from home.
It’s no exaggeration to say you never have an undisturbed night’s sleep.
As your little girl grows, your expenses grow. Lily still gets therapy almost every day, some of it covered by insurance, much of it not. You’re happy Lily goes to a public school, using a special computer that reads her eye gaze and speaks the words. She goes to a “free” summer camp, where her dedicated aide costs hundreds of dollars a day. Then there’s everything else: wheelchairs, a weighted blanket to quiet her limbs, strollers, adaptive toys, a special rotating car seat.
And Lily begins to cry more. Her limbs flail; her facial expressions do not always match how she feels. Once, she breaks her femur, a “buckle” fracture missed by the first round of X-rays. She cries for three days but you don’t know why. You finally get a diagnosis with an emergency X-ray. For three long weeks she wears a cast, and rehab lasts months. There are many more trips to the ER, and to specialized doctors. Why is she crying this time? Where does it hurt now? Lily cannot pinpoint the problem through her computer. She is given more drugs. You worry about the drugs. How are they interacting, how long will your sweet little girl have to take them.
One night, after Clonidine has helped your daughter to sleep, you look at your spouse across the dining room table. You are each thinking the same thing. What is the future for us? What hope is there for Lily?
You arrive at the thought: at least clinical trials have begun. There’s real hope for a cure for Rett Syndrome. You’ve supported RSRT since practically the minute your child was diagnosed, and the research is yielding fruit. In laboratory animals, Rett Syndrome has been reversed. Scientists all over the world are challenged by the promise of ground-breaking medicine in patients. Five or six more clinical trials are in the pipeline, awaiting FDA approval. Maybe a breakthrough will help your child to walk someday, or eat food normally, even, please, to breathe normally.
So you hope. You donate more than you can afford to RSRT. Maybe you pray. And you love. Above all, you love your child with all your agonized heart.
Ann McKenna Fromm & Bill Payne
Devin Fromm & Malin Delling, Lily Fromm
Allison Fromm, Calvin Laboon
Jay & Colleen McKenna
Ed & Patsy McKenna
Marian McKenna
Sunflower, for Hope
1 Donor
Cardinal, for Love
1 Donor
Lavendar, for Beauty
4 Donors
Goldenrod, for Joy
8 Donors
Orchid, for Friendship
24 Donors
| Name | Donation Amount | Date |
|---|---|---|
| Donna Timcho | $200 | December 03, 2024 |
| Joe and Deb Stuligross | $200 | December 03, 2024 |
| Richard & Carol Heppner | $100 | December 03, 2024 |
| Saroj Bahl | $100 | December 03, 2024 |
| Mary Ann Sharer | $500 | December 03, 2024 |
| Gail & Stuart Simpson | $70 | December 03, 2024 |
| David & Mary OBrien | $100 | December 03, 2024 |
| Walter & Jeneva Haglund | $250 | December 03, 2024 |
| Margaret Runnette | $100 | November 23, 2024 |
| Beverlynn Elliott | $500 | November 23, 2024 |
| Jay & Colleen McKenna | $1,000 | November 23, 2024 |
| Allison Fromm | $100 | November 19, 2024 |
| Jane & Howard Voigt | $100 | November 19, 2024 |
| Patricia Staley | $100 | November 17, 2024 |
| Susan Gilmore | $200 | November 15, 2024 |
| Paul & Penny McKenna | $1,000 | November 14, 2024 |
| Gayle Botti | $500 | November 14, 2024 |
| Stan Shayer | $250 | November 14, 2024 |
| Anonymous | $250 | November 11, 2024 |
| Marleen Pennison | $250 | November 11, 2024 |
| Frank and Katie Mihm | $75 | November 09, 2024 |
| Kate & Al Lewis | $100 | November 08, 2024 |
| Trinidad Ayoroa- Santaliz | $100 | November 05, 2024 |
| Georg Fromm | $200 | November 05, 2024 |
| Marcia & Paul Whitehead | $500 | November 05, 2024 |
| Louis Certo | $100 | November 05, 2024 |
| Marie Hinchliffe | $100 | November 04, 2024 |
| John & Janet Conomos | $150 | November 04, 2024 |
| Karl Fromm | $150 | November 03, 2024 |
| Anonymous | $100 | November 02, 2024 |
| Anonymous | $600 | November 02, 2024 |
| Jim & Susan Herald | $250 | November 02, 2024 |
| James Fanning | $200 | November 02, 2024 |
| Ricki Davis | $25 | November 02, 2024 |
| Annie & Joe Schlafly | $1,000 | November 02, 2024 |
| Jeanne & Richard Berdik | $50 | November 02, 2024 |
| Frederick Henninger | $500 | November 02, 2024 |
| Leslie & Doug Kittenbrink | $250 | November 02, 2024 |
| Lawrence Frolik | $750 | October 29, 2024 |
| Jacqueline Spagiare | $100 | October 29, 2024 |
| Arleen & Donald Wagner | $200 | October 29, 2024 |
| Gayle Botti | $100 | October 29, 2024 |
| Palma Veneziano | $250 | October 28, 2024 |
| Francis Hurite | $50 | October 28, 2024 |
| Laura & Andrew Voigt | $100 | October 28, 2024 |
| Harry & Mary Wagner | $250 | October 28, 2024 |
| Margo & Jay Troutman | $100 | October 28, 2024 |
| Marilyn Bruschi | $250 | October 27, 2024 |
| Noel Mariam | $100 | October 26, 2024 |
| Margaret and William Mooney | $50 | October 26, 2024 |
| Donna & Marc Rosenwasser | $100 | October 25, 2024 |
| Barbara & Lee Reichbaum | $100 | October 25, 2024 |
| Lois Foley | $250 | October 24, 2024 |
| Mike Lurey & Laurie Hasencamp | $300 | October 23, 2024 |
| Raymond Smith | $200 | October 23, 2024 |
| Rosemary & David Getsie | $50 | October 23, 2024 |
| Bil & Lisa Donovan | $100 | October 23, 2024 |
| Charles Snyder | $250 | October 22, 2024 |
| Julia & Larry Ondako | $300 | October 22, 2024 |
| Venkat Machiraju | $100 | October 22, 2024 |
| John & Kathleen Friday | $50 | October 22, 2024 |
| Edward Ifft, Jr. | $200 | October 22, 2024 |
| John Tumolo | $100 | October 22, 2024 |
| William Pietragallo | $200 | October 22, 2024 |
| Patrick Loughney | $1,000 | October 22, 2024 |
| Antonia MacPherson | $150 | October 22, 2024 |
| Olga Viviana Fromm Martinez | $40 | October 22, 2024 |
| Victoria Fromm | $150 | October 22, 2024 |
| Paul & Leloni Carey | $100 | October 21, 2024 |
| Diana Bowden | $50 | October 21, 2024 |
| Carol Robinson & Jeffrey Markel | $300 | October 21, 2024 |
| William Rackoff | $100 | October 21, 2024 |
| Joan Ewing | $150 | October 21, 2024 |
| Mary Therese Geraci | $50 | October 21, 2024 |
| Barbara Milton | $125 | October 21, 2024 |
| Lynnae Evans | $300 | October 21, 2024 |
| Lynnae Evans | $0 | October 21, 2024 |
| David Ehrenwerth | $100 | October 21, 2024 |
| Allison Fromm | $100 | October 19, 2024 |
| Betsy Quinn | $100 | October 18, 2024 |
| Richard Findlan | $250 | October 18, 2024 |
| John Myers | $500 | October 18, 2024 |
| Lynn Lagomarsino | $100 | October 18, 2024 |
| Dolly Gee | $250 | October 18, 2024 |
| Dan Schreibeis | $250 | October 18, 2024 |
| Carolyn McKenna | $250 | October 18, 2024 |
| Mary Flannery | $100 | October 17, 2024 |
| Lindsey Herman | $100 | October 17, 2024 |
| Thomas Bigley | $300 | October 16, 2024 |
| Bernie Newman | $25 | October 16, 2024 |
| Virginia & Bruce Fickman | $100 | October 16, 2024 |
| Thomas Friday | $50 | October 16, 2024 |
| Michael Swanson | $100 | October 16, 2024 |
| Rose Mary O'Malley | $100 | October 16, 2024 |
| Nancy & Thomas Kelly | $100 | October 16, 2024 |
| NAOMI HERMAN | $25 | October 15, 2024 |
| Michele Bender | $150 | October 15, 2024 |
| Kathleen Laboon | $100 | October 14, 2024 |
| Joel Hurt | $250 | October 14, 2024 |
| Matthew Rudzki | $50 | October 13, 2024 |
| Jane Waller | $250 | October 12, 2024 |
| Liza Brown | $20 | October 11, 2024 |
| Joyce and Edward Ging | $3,000 | September 09, 2024 |
| Antoinette From & Bill Payne | $5,000 | September 30, 2024 |
| Debrah Raschke | $200 | September 10, 2024 |
| Jordan & Erika Strassburger | $250 | September 10, 2024 |
| Mona & Edwin Strassburger | $250 | September 10, 2024 |