Gosh, the years are just flying by!
Hope you had a great day Getty, best wishes from Australia.
:):)
Happy birthday to Getty!
Getty. Today.
10 years, folks!
10 years…
Thanks for all the love and support.
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Amazing. Amazing. Happy birthday, girl!
Unbelievable! What a testament to her amazing parents!
Getty does her usual cake-cutting honors.
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Amazing! I’m so happy for you, Bearflag. How’s the Spinraza doing, both for Getty and for the other SMA kids?
StG
Happy Birthday Miss Getty! Double digits now, WOOOOOOO.
:):)
Happy birthday Getty!
Happy Birthday!
Hoot! Hoot! hoot! Hoot! Hoot! hoot! Hoot! Hoot! hoot! HOOT!
All good. Some fights in the community to get it covered for some folks, but good results in maintaining available strength from the time of dosing rather than experiencing constant loss of strength.
A couple new oral drugs will be on the market soon hopefully. This might cut the STEEP price tag of Spinraza, especially because Spinraza requires a hospital visit to administer, which poses an exposure risk for our fragile kiddos… especially with COVID19 around.
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Wonderful news! Belated happy birthday to Getty! Wow, has she grown! Keep learning and growing Getty, we need girls like you!
Happy Birthday Getty Owl…
Sorry it’s a day late… been thinking a lot about you guys… HUGS
Happy Birthday! Best wishes to the entire family.
happy birthday, getty!
may you continue to thrive!
hoot, hoot, hoot, hoot, hoot, hoot, hoot, hoot, hoot, hoot, hoot!!
I just now found this thread, and… wow. I’m already on board with the Getty Gang. How is the precious girl doing on her 11th birthday?
A CNN article about another precious girl with SMA, from Denmark, and her parents’ struggles to save her life.
Happy VERY late Birthday precious!
Bearflag, is the treatment Zolgensma covered here yet, and would it help Getty Owl?
Think of you often. Hope all is going well. <3