We are celebrating Otis turning 3 at the end of January and we feel incredibly lucky to be sharing this special day with our wonderful,  brave, funny and charming little man. Nearly 2 years ago we struggled to imagine if he would survive to reach this big day or how his quality of life would be. 

Otis has made amazing progress this past year with the help and support of Tango2 Research Foundation, our small family of fellow warriors and everyone who has raised previous funds and awareness. We are forever grateful to you all. 

However, there is still no known treatment or cure for this ultra rare disease and Otis’ future is still uncertain. Just writing those words are vomit inducing. It’s scary, it’s hard and the thought of losing him hurts. But it’s very real. 

As February is Rare disease Awareness Month I am going to aim to achieve 100 squats a day for 28 days. 2800 squats!! Some of you may know that Otis’ condition has limited our freedom and I’m not as active as I used to be. We have a lot of bad days, scary days and many many stay at home days. My fitness isn’t what it used to be but I’ll conquer this as a warm up hopefully to bigger and more difficult challenges. I want to move mountains for our boy and the Tango2 families.

Thank you all again for your love and support we really do appreciate it. 

Please check out www.tango2research.org for more information. You’ll see beautiful little Otis on the front page 😁