Advocacy
Mila was born 10 years ago in Boulder, Colorado to an adoring mother named Julia Vitarello. Beautiful and energetic from the start, Mila was a little girl whose personality drew others in naturally. Even as a three-year-old, she used her captivating smile, repertoire of Frozen songs and her soft touch to charm an entire flight…
Our small, closely knit, rare disease community lost one of our heroes. I have contemplated sharing this information because frankly, it makes it hard to breathe. When I saw the other mother’s post, my mind nearly imploded with grief and fear. I tried to push it out of mind so I could lead morning meetings…
We all need a little hope as we close out this incredibly unique year. 2020 brought a lot of pain and setbacks to our fight for a cure, but it did not squash our hope and determination to keep fighting for these innocent kids. This year also brought out a lot of love and support…
2020 has been nothing short of a dumpster fire of a year. I kept joking that Biblical locusts were about to descend upon the world. The joke was pretty funny until videos of locusts taking over the Middle East interrupted my nightly celebrity news on Page Six. But what if everything we experience in…
Only 4% of Federal Research Funding is Dedicated to Pediatric Cancer and the 5-year Survival Rate is 2%. Rare Pediatric Diseases are Mostly a Death Sentence for a Life that Never Began. Today is a terrible anniversary for my dear friends, Chris & Chantal Pittman. My family was entrenched in the diagnostic odyssey and desperately…
Maxwell was newly diagnosed with SLC6A1 and no doctor knew anything about it. More disheartening, no doctor wanted to learn. I was feverishly reading anything I could get my hands on that could help my innocent little baby. I was full of ideas and hope for an appointment with a neurologist, eagerly sitting down with pages…
Who Needs a Haircut!?! Especially a Home Cut!?! We have decided to have some fun with our hair while raising awareness for SLC6A1. I have never laughed so hard in my life with #HomeCutsForACure. Exhibit A: Mark Freed with a Mullet. Everyone that knows Mark well would barely recognize him without short hair and a…
Learn to be Thankful for What you Already Have, While you Pursue all that You Want – Jim Rohn A month ago, I sat in the waiting room as Maxwell finished up his horse therapy session. Gone are the days where his episodes of jerky, uncontrollable movements could be confused with a developing baby. Gone…
I recently shared my story with the national talk show, The Daily Blast Live. I have loved the show for a very long time and actually followed two of their hosts, Sam Schacher and Jeff Schroder on Instagram forever. I would recognize their families on the street and probably ask about their latest pumpkin patch…
The dreaded day we received the news that Maxwell was diagnosed with SLC6A1 was the worst day of my life. Mark and I sat at Children’s Hospital and listened to a never-ending list of things Maxwell would probably never do. I wanted to cover my ears and sing so I couldn’t hear the doctor’s words. …
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