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 Read more…
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 Read more…
The 1st Inaugural Milestones for Maxwell Golf Tournament will be held on August 17th, 2020 at Fossil Trace Golf Course in Golden, Colorado. We have another EXCITING announcement! The fabulous and talented Denise Plante from The Bull 106.7 will be judging our #MulletsforMaxwell contest! People may enter the contest digitally Read more…
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 Read more…
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 Read more…
I had planned a massive birthday party for the twins with a music class, Peppa the Pig appearance, lots of decorations and of course, good food. Unfortunately, COVID19 reset all expectations and plans for the world. At Some Point You Just Have to Let Go of What You Thought Should Read more…
Living with a Rare Disease is like Walking a Tightrope over the Grand Canyon. Your gaze must stay focused forward on achieving treatment. You can never look backward or down because you will stumble and fall. In 2019, we stepped out in the midst of our most private heartache to make Read more…
Maxwell and Riley knew that Santa Clause was coming to town on Christmas Eve and were so excited! Well, they were * kind of * excited. They did not enjoy meeting Santa at the mall as you can see. Riley said she would run away if she ever saw Santa Read more…
An adorable little girl named Mila Makovec lives just a half hour away from us in Boulder, Colorado. Mila has giant brown eyes, loves chocolate ice cream and singing along to Frozen. Mila is the type of little girl you would see in a grocery store and smile watching her Read more…
The rare disease world is filled with many high-highs and low-lows with some days being much better than others. I cling to the happy days when Maxwell learns a new skill, scientists reach a milestone achievement or something wonderfully unexpected happens. Today is one of those happy days… a day Read more…