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
0 Donors
Cardinal, for Love
1 Donor
Lavendar, for Beauty
0 Donors
Goldenrod, for Joy
0 Donors
Rose, for Friendship
2 Donors
| Name | Donation Amount | Date |
|---|---|---|
| Debrah Raschke | $200 | September 10, 2024 |
| Joyce and Edward Ging | $2,000 | September 10, 2024 |
| Jordan & Erika Strassburger | $250 | September 10, 2024 |
| Mona & Edwin Strassburger | $250 | September 10, 2024 |