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Ava Jean Jelly Bean

The purpose of this site is to provide regular updates on Ava's fight against SMA.

Latest journal entry

Happy New Year!

Happy New Year! We were so happy to spend all the 2018 winter holidays at home and with family instead of inside hospital rooms.

Ava has improved by leaps and bounds since our summer update. She's growing stronger through continued occupational and physical therapy sessions. We've stopped going to Children's Specialized Hospital and instead opted for in home therapy to avoid cold / flu germs. From her continued therapies she's now gained head control and is able to sit independently for several minutes! The head control alone was an amazing milestone but now seeing her sit up and play we can hardly contain our excitement about her progress. It really shows how miraculous Spinraza is and how hard Ava is working to succeed. She's continuing to inspire us every day. 

Ava will get her 7th Spinraza injection on Tuesday January 15. She is currently still eating via g-tube but will be going for another feeding evaluation this month as well. 

Thank you all for your support over this past tough year and for cheering Ava on from near and far. We can't wait to see what 2019 has in store for our strong little girl! 

Laura & Dan

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