#marianojonell

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Celebrating another Easter celebration with the best blessing I ever received! #marianojonell
John 16:21 When a woman is giving birth, she has sorrow because her hour has come, but when she has delivered the baby, she no longer remembers the anguish, for joy that a human being has been born into the world.

3 days of labor and c-section later, you arrived! The wait was long but so worth it!

I'm almost as tall as mommy #marianojonell #shesshort #almost3yo

Uncle Chuckie stopped by today! 😁. Thank u!
#marianojonell

EEG in progress... #marianojonell
#curemecp2

Morning worship🙏

Have a blessed day from Nano!
#marianojonell #cfhouston #blessedcf

Great news! We get to go home today!
#marianojonell

FINALLY GOT MY #MarianoJonell TSHIRT IN! 💜

Still wide awake 😀 "Mommy can you take these wires off already"
#marianojonell #cureMECP2 #cureRETT

My honey baby is doing so much better thank you all for the love and prayers!
#marianojonell [cant wait for #commonkings tonight, a little r&r for this momma]
#nootherlove like a momma to her son 🙏

MOST RECENT

Celebrating another Easter celebration with the best blessing I ever received! #marianojonell
John 16:21 When a woman is giving birth, she has sorrow because her hour has come, but when she has delivered the baby, she no longer remembers the anguish, for joy that a human being has been born into the world.

3 days of labor and c-section later, you arrived! The wait was long but so worth it!

I'm almost as tall as mommy #marianojonell #shesshort #almost3yo

Coloring some Easter eggs 🐣 and hopefully get to visit the Easter Bunny 🐰 tomorrow
#marianojonell

Sweet boy is headed home ❤️ #marianojonell

Ladies and Gentleman I wanted to introduce a little monkey given to Mariano. His name is Bwrett (boy with rett) and he will be traveling with my parents when they go to Rome.
Mariano loves to travel but is not able to go too far so my parents June and Barry are taking him on their trip to Rome to help spread awareness for Rett Syndrome.
Really excited to see Bwrett's journey.
#bwrett #boywithrett #marianojonell #curerett #cureMEPC2 @rettsyndromeorg

Love my parents and so glad they came to visit! Safe travels and many memories in Rome!! #familyisforever #daddysgirl #mommasprincessa #gpaandgmasfavorite #marianojonell #papasboy #heloveshisgrandma #iwokeuplikethis #onlywayupisforward

Getting fitted for my big boy wheelchair!
#marianojonell

When you're ready to go but mom has to play paparazzi
#marianojonell
#immabigboynow
#underarmourcurry #underarmour @stephencurry30 👌 @underarmour

Always trying, always fighting. Only day he's really been wide awake in a long time. He gets so tired using his tobii but he always tries. #marianojonell #curerett #curemecp2 #warrior #boywithrett

On the way home! Thank you for the love and prayers! Got a new machine to help me breathe. Seattle Children's Hospital staff was amazing as always! Thank you for getting me better! #marianojonell

Out of the PICU. Will be getting a sleep study done to help fix settings on BiPAP and hopefully home tomorrow 🙏#marianojonell

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