It’s official!! Brielle and I just finished 2 weeks of training in New Albany, Ohio with Canine Companions to be matched with her dog, Wrigley! Wrigley can do all kinds of things to help Brielle become more independent. Some of Brielle’s favorite things that Wrigley can do for her are picking up dropped items, tugging open drawers and doors, pushing doors closed, pressing buttons for automatic doors and elevator buttons and of course giving comfort and lots of love. We are so happy to have Wrigley as part of our family. 💕
Brooke had the most amazing week at MDA Camp! She already can’t wait for next year! Brielle didn’t want to go this year but she’s thinking maybe next year she might go too. We’ll see! (Stealing photos from Anna and Nikki.)
MDA Summer Camp!
Brooke’s teacher turned her classroom into a Poetry Cafe and the students could present some of their poems they had written to their class, teachers, parents and grandparents. This reverse poem is so unique and Brooke write this all on her own (with a template) about SMA.
✴️ A reverse poem is negative reading from the top to the bottom and then you reverse it and it’s positive when you read from the bottom to the top!
Last day of school! 🤩
What a fantastic year of academic and personal growth both Brielle and Brooke had this year. Already missing friends but looking forward to summer fun!
The FDA has approved Zolgensma, for the treatment of SMA patients under the age of 2 years old.
Zolgensma is the FIRST and ONLY gene therapy approved by the FDA for the treatment of SMA.
Zolgensma is designed to address the genetic root cause of SMA with a single, ONE-TIME intravenous infusion.
Brooke and Brielle has their annual sleep studies last night. They have done so many of these it’s no big deal to be covered in wires while they sleep anymore. The worst part is washing off the goop (that makes the electrodes stick) the next morning. B&B both slept well. We will get results in March. 🙏🙏
💖Daddy/Daughter Dance 2019💖
When in Pandora... you dress like a Na’vi.
Happy New Year! 🥳
Merry Christmas! 🛷🎄
Spinraza dose number 8 today for Brielle & Brooke =one million+ dollars of treatment for each girl =getting stronger. 👯♀️
Happy Birthday to this sweet TEN year old! ❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️
🌟The world is so much brighter with you in it. 🌟
Yearly tradition of gingerbread house decorating, meeting Santa, then a stroll in the park.
Bring on Christmas! 🎅🏻🎄
Spooky spiderweb hairstyle today for Halloween. 🕷
Brielle was nominated as one of this week’s HCRR heroes at school! She shows Honesty, Caring, Respect and Responsibility (HCRR) in all of her classes and she gets to wear this cool cape for the week along with some other fun perks at school. She also got to wear it at Hippotherapy and have some extra fun with it during her session. ⚔️
Keep up the good work, Brielle we are SO proud of you! 🤩
Found this in Brielle’s folder tonight. 💕💕💕
My little sister Brooke inspires me because she’s very happy all the time and that makes me feel like I can do anything.