Hi friends and family,

It has been far to long since I have shared an update, but we've been thinking of you all! Today, is rare disease day. I find my Instagram feed flooded with rare disease statistics, personal stories, and people lifting up the rare disease community. As I scroll, I think of how you all have lifted us. I feel such immense gratitude for each and every one of you - for your love, kindness, friendship, support in many forms, and your generosity.  

It’s been almost a year since I created this page and so much has been done to support Jordan and make her world more accessible. Some pictures I’ve included are just some fun ways we helped Jordan access her world. My sister helped make an incredible Halloween costume that went over her wheelchair and she had a button that she would press to say “trick or treat.” She was a sailor in a submarine, just like her Grandpa. We were able to go to UConn bball game with friends. We went as a big group and sit in the bleachers!!! It is unlikely we’ll be able to do this as Jordan gets older (certainly not as easily) so it was truly special and memorable. Jordan and I solidified our love of racing and plan to do many more 5ks, 10ks, and someday a 1/2 marathon together as a “wheelchair assisted duo.” Jordan also has some great things coming up in the next few months. She has a few more intensive therapy programs scheduled, a few races lined up, and a big birthday in March - 5 years old!!! 

Life has been so good lately and we feel incredibly fortunate because we have such incredible friends and family. Thank you for all your love and support!!

Love,

Anne, Chris, Jordan, and Jonathan 

P.S. the pictures appear to be getting cut off, I apologize for that. I've played around with it but cannot seem to format them differently. Hope you still enjoy them. :)