There is no cure for Rett syndrome. Nor is there an A, followed by B, followed by C, predictable, sequential decline. The genetic neurodevelopmental disorder is unpredictable and fierce.
Bella Rutko is one of its victims. She’s 9 years old. She can’t walk. She can’t talk. She can’t turn the pages of the books she reads. She can’t even hold the books.
When she was a baby she met all of her milestones. She rolled over. She sat up. “She would do all the animal sounds,” her mother, Holly, says. But as Bella approached her second birthday, something happened. “In just three weeks, she regressed.”
She lost muscle tone. She withdrew. She never spoke again. “Imagine the symptoms of autism, cerebral palsy, Parkinson’s, epilepsy, and anxiety disorder all in one little girl.”
This is Bella today.
Her smile is the only thing untouched by Rett syndrome. Bella smiles and you see the light inside of her. You see her soul. And there is no Rett syndrome there.
Her parents, family, friends, schoolmates, the people who care for her and care about her, see this. And it’s this that keeps them going. Even when the going is tough.
The going has been extra tough lately. For months Bella’s been having seizures, clusters of them. One right after the other. They wear her out. They wear everyone out. The seizures come out of the blue. She can be smiling one minute and convulsing the next. They make her weak and they make her vomit. They make her whole body shake. Sometimes they make her stop breathing.
Medications quiet the seizures. For a while. Then Bella sleeps. But when she wakes up the seizures start all over again.
It is 11 o’clock on a Sunday morning when I drive to Rehoboth to meet Bella. She didn’t have a good night, her mother tells me. Bella has central sleep apnea, too, which means that when she falls asleep, she often stops breathing. Bella’s sleep monitor, which alerts the family with an alarm, went off 16 times.
Bella’s dad, Jeff, had spent the night with friends (“We can never go away the two of us together, so we take turns.”) So 16 times, Holly raced to her daughter’s side and went into action, assessing — was she having a seizure?; had Bella stopped breathing? — and doing everything she’s learned and memorized to save her daughter’s life.
You would never know it had been a hellish night. Bella is dressed and pretty sitting in her wheelchair when I arrive. Her brother, Zackary (Bella’s “little big brother”), is talking to her. A nurse is helping her choose a book. Her mom is smiling. Everything seems under control.
But it isn’t. It never is. Bella can convulse or stop breathing at any time. “She can never be left alone,” Holly says.
“As a parent you search high and low. You think there has to be something that would stop the seizures.”
But there isn’t.
Holly had heard about seizure therapy dogs. A few months ago, she went to work researching. Now is a good time, she thought. A dog can’t stop Rett syndrome. Nothing can. But a trained service dog would know when Bella is having a seizure. “To have a dog alert us [before a monitor beeps, those seconds critical] would be huge.”
“When Bella is having a seizure her whole body tremors,” her mother says. “I lay on top of her or put a weighted blanket on her.” But her mother isn’t always there. A dog would be, trained to cover Bella’s body, too, weighing her down, comforting her. “To know that Bella would always have companionship.”
You can’t put a price tag on this.
But there is a price tag and it’s high for any family but especially for one already dealing with the staggering cost of long-term medical care. Both Jeff and Holly have good full-time jobs. Still, $25,000 is out of their reach.
If they can raise the money, a dog would be trained specifically for Bella. It’s a long, 14-month process. But the sooner it begins, the sooner Bella will have something Rett syndrome can’t take away: an alert, loving companion constantly by her side.
October is Rett Syndrome Awareness Month. On her Facebook page, Holly Ceritto Rutko has written “31 Days of One Mother’s Journey of Loving a Child with Rett Syndrome.”
Beverly Beckham’s column appears every two weeks. She can be reached at email@example.com.