Hillary Savoie

Hillary Savoie is a writer, rare disease advocate, and mixer of oddball cocktails. Mother to Esmé, the rarest of the rare.

Are We Ready To Talk Honestly About Disability, Pro-Choice Politics, & That Abortion Ban?

When I saw the email asking me to write about the recent Ohio law that makes performing an abortion after the prenatal diagnosis of Down syndrome a felony, signed last week by Governor Kasich, I winced. While I have a lot to say about disability and …
By Hillary Savoie

If You’re Expecting, You Should Know The Symptoms Of HELLP Syndrome

Kristin Hinton, in the hospital laboring with her first child, when her doctor overheard Hinton mention a pain in her shoulder and neck, and asked about it. Hinton told the doctor about that pain, as well as pain she had in her right ribs over the la…
By Hillary Savoie

Why I Threw Out My Daughter's Developmental Testing Reports

Given my 6-year-old daughter Esmé’s disabilities, developmental testing — the process of assessing a assessing a child's developmental skills using standardized testing methods — is very much a part of our lives. These tests are a requirement for my …
By Hillary Savoie

Don't Know Any Young Moms With Special Needs Kids? They Probably Unfriended You

Amanda Smith’s voice halts periodically as she talks about her 9-month-old son Oscar. After a totally uneventful pregnancy, Oscar was born with a rare genetic mutation neither Smith nor her husband carry. He spent the first two months of his life in …
By Hillary Savoie

Donald Trump Wants "Better" Health Care — But Not For My Child

This morning, I diligently made my morning calls to the moderate Republican Senators who are wavering on voting for the Senate’s version of the healthcare reform bill, the Better Care Reconciliation Act (BCRA). The BCRA is the Senate counterpart to t…
By Hillary Savoie

You Don't Care About My Daughter's Life If You Voted For AHCA

My 6-year-old daughter Esmé is medically fragile, which means she has special health care needs. While she doesn’t have a clear diagnosis, we know that she has four separate genetic mutations that cause a suite of symptoms, including seizures, develo…
By Hillary Savoie

Why Talking About Stillbirth Is So Necessary In 2017

Before the summer of 2015, I understood that stillbirth — or the death about a baby during pregnancy after 20 weeks gestation — was something that happened. However, based on the number of times I’d ever heard anyone so much as use the word stillbirt…
By Hillary Savoie

An Open Letter To My Congressman About Trumpcare

Dear Congressman Faso, I call your office pretty regularly these days. I’ve requested meetings with you on the Congressman John Faso website and through your scheduler directly, but no luck yet. I also would have attended a proper town hall meeting, …
By Hillary Savoie

I Long To Hear My 6-Year-Old Daughter's Voice

There are so many things that are different about my daughter Esmé — most, but probably not all, stem from her four separate genetic mutations. There are the scary differences — the seizures that started in infancy, the breath-holding spells, the rep…
By Hillary Savoie

Special-Needs Parents Share Why DeVos Scares Them

The confirmation of Betsy DeVos as Secretary of Education, arguably the most controversial confirmation process in a series of contentious confirmations, is not likely to be forgotten by anyone any time soon. DeVos was barely confirmed by the senate …
By Hillary Savoie

My Medically Fragile Child's Future Is Uncertain

My daughter Esmé is pretty sick at the moment. In typical form for Esmé, who is a medically-fragile child, we aren’t certain what, exactly, is going on. For the last few days my 6-year-old girl has been sleeping on me almost constantly, waking only t…
By Hillary Savoie

As A Special Needs Mom, I'm Terrified Of Trump

I feel as though I've been in shock since I woke up on the morning of November 9. As we move closer and closer to the inauguration of Donald Trump as president, I've found it incredibly difficult to come to terms with the realization that my fellow c…
By Hillary Savoie

I'm Terrified Of Having Another Baby

Recently, I got some news that I'd been hoping to receive for years: According to the medical team that works with my daughter Esmé, who has four known genetic mutations, the chance of having another child with my daughter’s complex medical condition…
By Hillary Savoie

This Is How We're Failing Parents Raising Children With Special Needs

“When do you sleep, Liz?” I’m asking for the article, but I'm also concerned, frankly, about her long-term sleep deprivation. “I typically get two hours in a row, sometimes four, at night. Then I cat nap during the day.” I pause to let that sink in. …
By Hillary Savoie

11 Costume Ideas For Kids With Special Needs That Are Fun & Meaningful

It seems to me that there are a lot of elaborate Halloween costume ideas for kids with special needs making the rounds right about now. I personally have a ton had videos and articles showing costumes for kids in wheelcahirs shared with me multiple t…
By Hillary Savoie

Is Medical Marijuana Safe For Kids? Experts & Parents Weigh In

As a parent of a child with severe genetic epilepsy encephalopathy, I cannot tell you how many times I have been asked if medical marijuana is safe for kids and whether or not I've considered treating my daughter with medical marijuana. Having seen t…
By Hillary Savoie

Honestly, Finding Care For My Fragile Child Is A Constant Struggle

My daughter Esmé is 5-and-half years old. She was supposed to start Kindergarten this year. However, the school year started more than five weeks ago, and she still hasn’t been once, except to drop off her school supplies. Esmé wasn’t going to attend…
By Hillary Savoie

Down Syndrome Is Most Common In Women Under 35, But Why?

Mekel Akins Bergschneider and her husband were shocked and devastated at their 20-week anatomy scan when the doctors told them the news that the baby they were expecting likely had Down syndrome. Down syndrome, also known as Trisomy 21, is a genetic …
By Hillary Savoie

My Medically Fragile Child Is Never Going To "Get Better"

Sitting across the table from my mom and stepfather in a densely packed Parisian bistro, I cannot help but wonder about handicapped accessibility in a tiny restaurant like this. I glance at the family sitting next to us, their table so close I could …
By Hillary Savoie

I Tried Dressing My Daughter Up For A Week & Learned A Lot More About Myself In The End

When I pitched this experiment to my editor, I told her I recognize that I dress my daughter Esmé differently than I might otherwise have because she is disabled. Recognizing that this sounds a bit weird, I explained that I want Esmé to be dressed ex…
By Hillary Savoie