A Voice for the Voiceless

I want to speak up for those who can’t talk can’t walk can’t see can’t interact   there were so many can’ts in that sentence why not focus on what a person CAN do? I am sick of this society pushing us aside like we don’t matter   we do matter we do have a voice We each have a purpose we are loved and cherished we have a life we were placed on this […]


I held my hand against the tiny baby inside my belly while she moved and thought of the past few months. During the 20 week sonogram the technician told me it appeared that there might be a cleft lip & palate, water on the brain, clubbed feet, dilated kidneys and no stomach. The doctor said she wouldn’t live to or past her birth and referred me to another physician. The clubbed feet & water on […]

Five Ways for Exceptional Parents to Get Involved with Rare Disease Day-Tuesday, February 28, 2017

Rare Disease Day is an international awareness campaign that takes place on the last day of February each year. It is the one day the world comes together to recognize people with rare diseases with the goal to raise awareness among the general public and decision-makers about rare diseases. Why do rare diseases need an awareness day? As it turns out, rare diseases are not so “rare.” There are approximately 7,000 rare diseases that combined […]

Looking for a Diagnosis

Our daughter Leah got a diagnosis after waiting three long years. Our insurance would not pay for genetic testing. We were very fortunate to have Aware of Angels donate this testing to us. Leah was a healthy happy five month old and over night her body began to have hundreds of seizures. She lost all her motor skills and communication skills. We were devastated. She spent countless nights in the hospital where she was poked […]

This Ain’t No Gerber Commercial

I measure that kid’s life in hair.  Upon first glimpse, raw red preemie scalp. A dozen weeks later, still in hospital, an elder-style ring of orange fuzz ran around back from ear to ear, then bald again. Next came yellow curls that we grew out like Kelsey Grammer.  Our towhead’s curls turned brown in a few years, just as each of his parents’ did. And here and there we made the kid cut his hair. […]

January 19, 2010

January 19, 2010.  This date probably doesn’t have a significant meaning to you unless it happens to be your birthday, anniversary, or some other milestone with cause for celebration or remembrance.  For my family, that was the day our lives changed forever.  That was the day our sweet girl got diagnosed with the big, bad “A” word…AUTISM, and our crazy little adventure began. I’m getting ahead of myself, so let’s back up a little… Once upon […]

6 Habits of a Rare Mama -My Goals for the New Year

  Like most of us out there, for the last couple weeks I have been thinking about what my resolutions for the New Year would be. Fitness, finances, …all the same things that for me personally are going to last 7 – 10 days if I am lucky. Also like a lot of us out there, I have been on Pinterest a lot the last couple weeks. Of course looking for the best answers to […]

Little Jealous of Sophie

One morning not long ago, I screeched into the carpool lane of our neighborhood middle school and hustled my always-late kid out the door, stopping for a moment to marvel at her brightly colored, striped knee socks. It was crazy sock day, the school had sent a flier home confirming it, but I wondered how many other eighth graders were wearing striped knee socks that day. None that I saw as I pulled away from […]

A Group No One Applies to Join

“I belong to ECD. A group which no one applies to join.” The spirited mother of four recounts a tale of searching, frustration, courage, and finally hope. Janet Bunge was diagnosed with Erdheim-Chester Disease in 2015. The journey started in 2003 with a few uncomfortable bumps on her legs that revealed to be much more than a rash. Erdheim-Chester Disease, a rare, slow-growing cancer creeped through Janet’s skin, bones, lungs, heart, and finally, her brain. […]

Forgetting Milestones & Learning to Measure Progress…a New Way of Thinking!

When you hear those words “Your child has…” we all experience similar feelings. The end of that quote may contain a different diagnosis, but for most of us the feeling deep in our stomach or caught in are throat are the same. That feeling that your heart aches because you no longer know the vision or the way your path will lead. All you feel is confused and scared. Some of us hear those words […]