For anyone that may not know the story about my neice Daisy she was recently diagnosed with Shashi-Pena Syndrome (ASXL2), back in May, as a family we felt understandably overwhelmed and confused but the ARRE Foundation have been there to support my sister and to turn to for answers.

What they found was a community who would support them, who understood what they were going through and who would lead the way through the confusing journey of a rare diagnosis.  

While there is no cure for Shashi-Pena syndrome and so much is still unknown, my sister Danielle and our family felt compelled to do something about it. Danielle said, “It was really important to me to turn something uncertain and sometimes scary into something positive that can help.”  

That’s where her idea, “Daisy’s Diamonds”, was born. Danielle, her two sisters, mom and a dear friend decided to commit to walking 2 million steps in the month of August raising over $2000!

But this time this Diamond is going at it alone and I will be running the 26.2 miles of the Chicago Marathon! 

Special Children’s Charities and ARRE foundation have been the driving force behind inclusion and empowerment for children and adults with intellectual and developmental disabilities and I can not wait to raise as much as I can for these amazing charities!

Again, thank you for supporting the thousands of participants with intellectual and developmental disabilities