Whitley's Warriors

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Whitley's Warriors

Whitley Shae has SMA-type 1, we created this page to share about her life & everything we go through

17/02/2023

Still crushing goals and gaining more and more steps every day!

08/02/2023

Big sisters are the best encouragement. Baby girl has started taking 1-2 steps unassisted, can stand for longer periods of time without holding onto anything. We recently got her braces cut down and it’s been a tremendous help! She cruises all over the house with her walker now ❤️ it’s truly a blessing to see her upright nearly all the time now.

We are in such awe with how far she has come in the last year alone. Nothing can stop her now💕

20/05/2022

It’s been awhile since we’ve posted a video update but I can promise you, this girl is still killing it ❤️

She works her tail off in therapy twice a week and multiple times a day that we work with her at home. We are waiting on her AFO’s but she can still manage to stand for short periods of time.

We are thankful for each and EVERY milestone ❤️

28/02/2022

Today is Rare Disease Day, the world-wide advocacy movement to help individuals with rare diseases obtain quality healthcare, equity in social opportunity, and access to diagnosis and therapies.

Share your SMA story online today and encourage others to show their support by making a gift at www.curesma.org/donate. 🧡💜

16/02/2022

Such a big girl! ❤️❤️

05/01/2022

Whitley update ⭐️

We had labs today to check her levels since starting Evrysdi 3 months ago! She did so well. We should know the results this evening or tomorrow.

She has came SO far since starting this medicine. She sits unassisted, doesn’t fall over anymore. Can now pivot herself in circles while sitting to get to things she wants and has almost mastered getting down from a sitting position. Also can sign “more”!!

She is such a miracle and we are so thankful for all the milestones she has reached ❤️❤️

Thank you all for always praying and checking on her!

10/09/2021

Sorry to have been nonexistent lately! But we are making wonderful progress in all areas.❤️ Whitley tried puffs and crunchies for the first time ever and has done AMAZING, even feeding herself! I honestly thought this was a milestone out of reach because she just now started accepting baby food and it’s on HER terms, some days she wants it and other days she doesn’t want a thing to do with it. Nonetheless I am PROUD! She is rolling everywhere (only over her left shoulder), but reaches everything she wants. We are working on going over the right side as well. She is beginning to sit with little assist. I cannot wait to reach the point of her doing it by herself, you can see how badly she wants to! (Miss independent 😜) I think that’s all the new stuff we have mastered here recently! I’ve been trying to get a video of her rolling but the kids either always have my phone or she decides she’s not doing it 😂 Hannah Lynn Sullivan

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http://www.cureSMA.org/

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