Rachel’s Story
The EDS Zebra Club is home to many Fractured Zebra Families. We hope that by highlighting what is happening to our families with Ehlers-Danlos Syndrome that we can do our part to bring about much needed change to protect the families of medically fragile children.
It’s important to bring awareness to what these precious families are enduring, and we are so proud of them for being brave and sharing their stories.
“On January 7, 2025, our lives changed forever. Our 2-month-old daughter, Josie, began acting strange—her eyes were drifting to the right, and she was lethargic and distant. We knew something was wrong.
We rushed her to the ER for neurological evaluation. We had no idea we were walking into a nightmare.
Josie underwent a CT scan that revealed she had a skull fracture. More alarmingly, she had additional fractures on the sides of her skull in various stages of healing.
We were blindsided and confused.
They ordered a full skeletal survey. Of course we agreed. We just wanted to understand what was happening to our baby.
But while I was holding Josie through that next round of scans, a social worker was already with my husband, telling him they had contacted DFCS and suspected abuse—before the full results were even in.
The skeletal survey revealed even more fractures. None of which had ever shown any outward signs. She had no swelling. No bruises. No cries of pain. How could this be?
The following morning, a Child Advocacy doctor met with us. We told her everything. Every little bruise we’d noticed, but she dismissed each one, saying they were unrelated. According to her, these injuries had to be the result of shaking and slamming—as if we had assaulted our baby.
She gave her opinion to law enforcement without even waiting for further medical results.
No retinal hemorrhaging was found—proving she had not been shaken. And yet, that was ignored. We had to beg for genetic testing to be done, and even then, were told it was a formality—they had already decided.
That same day, January 8, DFCS took both of our children from our custody.
In an instant, my family—my world—was torn from me.
Then came the “no contact” order. We were made to sign paperwork agreeing to stay away from our own children. It felt like a cruel tactic to break us. But there was nothing to confess.
We had never harmed Josie—or any child.
And then, on January 14, we were both arrested. Each charged with five counts of aggravated assault and cruelty to children. Even though there is no evidence to support their claims.
Eventually, lab results from CHOA came in. Every test was normal—except one. Josie’s 1,25 Dihydroxy Vitamin D levels were extremely elevated. A known marker of Rickets or other Vitamin D disorders.
But CHOA ignored the results.
Desperate for answers, my parents took Josie to a pediatric geneticist who ordered a whole exome sequence test. She took our DNA as well.
She believed we could both have an underlying condition—Hypermobile Ehlers-Danlos Syndrome (hEDS)—a connective tissue disorder known to cause fragile bones and easy bruising.
On March 14, I was officially diagnosed with hEDS.
Josie also shows almost all the symptoms of EDS along with other disorders. We are still waiting on the results of the whole exome sequence, along with other reports from our own experts regarding the imaging.
We filed to grant custody to my parents to keep our children out of foster care. And on April 4, DFCS closed our case.
But we still live under the shadow of the criminal charges.
We are still fighting. We still cannot hold Josie.
I only had two precious months with my daughter before she was taken from me. I don’t know when I’ll be able to hold her again.
Please pray for our family. Pray that we’re reunited soon.”
Help Reunite The Tallon’s
