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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


It has been a while since our last update but Ava has had a busy summer so far, full of fun, positive, activities. She was at Morristown Hospital for 10 days in May fighting off rhino enterovirus. For Ava, 10 days is a short stay and we are very excited at how quickly she bounced back from this respiratory infection. Even better news is that right before we left she was able to receive her 5th dose of Spinraza.
Since then she has been working hard in Physical and Occupational therapy, she recently has been holding her head up unsupported in sitting position for several minutes at a time. She can now roll from back to front and push with her hand / arm to go back. She now has an adaptive life jacket she's been using to swim in pools and the bay...and the bathtub when it's not a great day outside :) Swimming allows her to easily kick or sway her arms and legs and have some independence to move on her own.
Ava is a rock star and we are so incredibly impressed with her motivation and positive attitude. Her next Spinraza dose will be in September. In the meantime we hope to enjoy a sick-free summer with lots more physical milestones!

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