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 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 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 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 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 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 Read more…
Lots of Fun Things! SLC6A1 Connect will be hosting the First Annual Golf Tournament at Fossil Trace Golf Course in Denver, CO. The course is truly beautiful and there will be a lot of fun surprises. If you are interested Read more…
JP Morgan hosts the world’s largest healthcare conference every year in San Francisco. If you want to learn about the latest innovation and advances in biotech, the conference is the place to be. Not only does it boast world renowned 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 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 Read more…
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