Our Story: How a Misdiagnosis Tore Our Family Apart — and How Dr. Holick Helped Bring Us Back Together
Hello, my name is Holly, and my family was fractured on May 2, 2018. Our second child, our son, was born via emergency forceps delivery after no heart rate could be detected. I hemorrhaged after birth, losing nearly 1,000 units of blood, and suffered a fourth-degree tear from front to back as a result of the traumatic delivery.
From day one, our son struggled with feeding and cried far more than our oldest had. Despite weekly weight checks and multiple wellness visits, no serious concerns were raised. Six different times in the first ten weeks of his life, he was seen down to the diaper and was consistently deemed “perfectly healthy — just slow to gain.”
Our daughter, who was 14 months old at the time, was also seen regularly — at every well check and for even the slightest illness.
At our son’s final weight check, I pointed out his bulging soft spot. The pediatrician finally ordered an ultrasound. The results led to additional imaging, which revealed bilateral subdural hematomas and multiple healing fractures throughout his body. They then demanded our daughter receive X-rays, where they claimed to find “old, healed rib fractures.”
Without any discussion or investigation, we were immediately accused of non-accidental trauma. A safety plan was forced on us. Then, without warning, we were kicked out of the hospital room. We were told we were no longer allowed to be alone with our children.
Four months later, both my partner and I were arrested and spent three weeks in maximum security jail, followed by a no-contact order between us and our children. I went 97 days without any contact with my babies. They were 6.5 months and 19 months old when this began.
The Fight to Prove Our Innocence
From the moment we were accused, I never stopped searching for answers. I had waited my entire life to be their mother, and I knew in my soul that this wasn’t abuse. I was always with them. I knew something had been missed.
I eventually found another family with a story similar to ours — and they told me about Dr. Michael Holick.
I reached out to him, desperate. He responded. And suddenly, my strange health history — and our children’s — started to make sense. We traveled to Boston to see him in person. He diagnosed me and both of our children with hypermobile Ehlers-Danlos Syndrome (hEDS) and vitamin D deficiency rickets. He was able to explain every injury in detail — how they happened, why they happened — and trace many of them back to birth trauma, not abuse.
Dr. Holick became the single most credible medical expert in our case — on either side. His testimony was instrumental in winning our first victory in family court. Even then, CPS appealed. For a full year after that, we lived in limbo, waiting for a response from the appeals court.
What We Endured
In the eyes of the system, we were still treated as guilty. We were charged with two counts of felonious assault and two counts of felony child endangerment. What should have been one year of probation turned into five years of intensive probation.
We did everything they asked — house arrest, parenting classes, supervised visits, multiple expert evaluations — and still, it was never enough. Caseworkers lied in court. Detectives twisted the facts. They demanded we admit guilt for something we didn’t do, even after multiple medical experts confirmed our children had metabolic bone disease and EDS — and were not abused.
We ultimately pled to misdemeanor child endangerment — for “failing to recognize injuries” that weren’t even recognized by medical professionals. Yes, you read that right.
Even after winning in family court and again in appeals, they tried to keep our children from us. But eventually, after two excruciating years, our babies — then 2 and 3 years old — finally came home.
The Truth
We were targeted. Blamed. Torn apart.
All because of a rare genetic condition that was missed by medical providers — and a system that would rather punish parents than admit they got it wrong.
Dr. Holick was one of the only experts willing to look deeper, to listen, to follow the science, and to tell the truth. Without him, I believe our children would still be in the system today.
He gave us more than a diagnosis. He gave us our chance to fight back. He gave us hope. And in the end, he helped us bring our children home.
To any parent reading this — don’t give up. Keep fighting. Keep asking questions. And if you’re lucky enough to get Dr. Holick on your side, know that you’ve found someone who not only knows the science, but cares enough to use it to save lives.
My Story: Living with EDS, Fighting to Be Heard, the Support I received from Dr. Holick — and Now Fighting for Others
Growing up, I always felt like something was different about my body, but no one ever really listened. I was the kid who always had sprains, jammed fingers, rolled ankles—things that seemed small but kept happening. I had asthma flare-ups, allergies that made me miserable, scoliosis, and even went through puberty earlier than most girls my age. I was always dealing with something, but doctors brushed it off. “You’re fine.” “She’s just flexible.” I started to believe maybe it was just me.
No one ever mentioned the words Ehlers-Danlos Syndrome.
Years went by, and I adapted the best I could. But it wasn’t until my life turned completely upside down during a wrongful medical kidnapping case that I finally found out what was going on. In the middle of fighting to prove our innocence and bring my children home, I learned I had EDS. That diagnosis changed everything. It made so many puzzle pieces click—not just for me, but for my children, too.
Even then, I struggled to be taken seriously by doctors. My primary care providers still dismissed me, or didn’t know how to help. I kept pushing through—like I always had. But after the case was finally over and my children were home safe, I started to fall apart.
My body went into a full collapse. I was diagnosed with cranio-cervical instability and a rare genetic defect from EDS—a retroflexed odontoid process that was compressing my brainstem. It was terrifying. I needed cranio-cervical fusion surgery to survive. It was one of the most intense and painful chapters of my life, but it was necessary.
Alongside EDS, I live with hyperPOTS and mast cell activation syndrome (MCAS). These conditions make everything harder. My heart rate can spike just from standing up. I deal with dizziness, near-fainting, heat intolerance, allergic reactions, and digestive issues—things that affect every part of my day. There’s no break from it.
And the hardest part? Sometimes I look fine. I can go into a phase of remission and seem like I’m doing great—once, I even got strong enough to run on a treadmill. But then the flare hits. Suddenly I’m back to using a walker or rollator, struggling just to get through the day. It’s not linear. And when people only see the good days, they question the bad ones.
Even trying to grow my family came with complications. When we wanted to conceive again, my birth control implant had gotten stuck and embedded—it had to be surgically removed. Because of my health history, my pregnancy was high-risk from day one. I had a full team assigned just for me, blood on standby, and constant monitoring. I delivered via C-section, and even though I was dizzy, weak, and battling intense POTS symptoms, I still breastfed. It meant everything to me to give my daughter that start. But it took everything I had.
Through it all, the hardest part has been the medical system. I’ve had to advocate endlessly—for my kids and for myself. I’ve sat in rooms with doctors who shrugged their shoulders, admitted they didn’t know what to do with me, or acted like I was exaggerating. I’ve walked out of appointments in tears, exhausted from having to prove I’m sick.
But from all that pain, something powerful was born: my voice—and my purpose.
Now, I’m an advocate. I speak out about EDS, wrongful child removals, medical gaslighting, and the deep gaps in our systems that leave families like mine fighting alone. I’m actively working on getting legislation passed to protect families from medical kidnapping and misdiagnosis. I’m pursuing my peer support certification and using both my lived experience and my background in early childhood education to uplift others who are in the trenches I once had to crawl through.
I’ve turned my trauma into testimony. I’ve found strength in vulnerability, and power in telling the truth—even when it makes people uncomfortable. I’ve made it my mission to stand up for those still being ignored, still being hurt, and still being silenced.
I live in a body I have to will into functioning. Some days it cooperates, other days it doesn’t. But every single day, I fight—not just for myself, but for every person like me who deserves to be seen, believed, and helped.
Part Two – Dr. Michael Holick’s Role in My Life
When the nightmare of our medical kidnapping case began, Dr. Michael Holick wasn’t just a name in a medical journal — he became the lifeline that anchored my family. From the moment we connected, he was more than a physician; he was an unwavering advocate who fought beside me when it felt like the entire system was stacked against us.
We have been in constant contact ever since. As my health challenges unfolded — from EDS and POTS to scoliosis, MCAS, and more — he always knew what was happening before anyone else, naming it for what it was and being right every time. It wasn’t just medical expertise; it was his deep understanding of the bigger picture, the way my conditions interconnected, and the strength of his belief in me when others doubted.
He guided me through some of my most important life decisions — even preparing me for pregnancy. He explained what to expect with my high-risk status, how to manage flares, and the steps we could take to protect both me and my baby. That preparation gave me the confidence to face a process that could have been terrifying, and instead approach it informed and supported.
He didn’t just save my health. He saved my children, my family, and my future. His testimony and relentless dedication brought the truth to light in a time when lies and assumptions could have destroyed everything.
Over time, Dr. Holick has become one of the dearest mentors in my life — someone I trust not just with my medical questions, but with my hopes, my fears, and my advocacy work. He’s shown me that the right person, at the right time, can change everything. And in my life, that person was him
