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.
First Day of 4th grade!
First day of middle school!
Spinraza #7 dose is in and Brielle was sound asleep recovering and I noticed her legs moving like this! The medicine was instantly working!!
Lighting our Charlotte Candle Company candles designed by B&B tonight (we just got them today!) for the 💜Annual SMA awareness candlelighting 💜 for all of the SMA warriors and those who are now in Heaven. Brielle was diagnosed at 16 months old with SMA - the #1 genetic killer of children under the age of two and at that time, no treatment. Brooke was diagnosed shortly after birth because we found out it was genetic.
Next week they get another dose of the newly approved treatment, Spinraza, and we are so thankful for the halt it puts on the progression of the disease.
#smaawareness #smacandlelighting #icanandiwill #charlottecandlecompany