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#marianojonell

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Deception Pass, Whidbey Island WA #imokpapa #marianojonell #bwwrett

#thankful for my son #marianojonell
His strength and courage has been absolutely amazing. He is so loved and not just by us. All the love and prayers sent to him, I cannot begin to explain how much it means to me. I give the Lord thanks and praise for all glory belongs to him! Thankful for all hard times and my blessings, especially the blessing of my child. I miss you son! #imokpapa
#thanksgiving2015

Check in complete.
Vitals taken.
Awaiting surgery team to call him back.
He's asleep and stats look great.
BB8 and his favorite blanket will be with him for comfort. Gods Grace with keep him safe and in good hands. πŸ™πŸ’œ
#marianojonell
#curerett
#cureMECP2
#prayersfornano

Precious hands
Cute little feet
Soft skin like a baby
A true warrior to meet

#marianojonell #thegreatestwasLOVE

Daddies here!
#marianojonell

Follow up ENT
Looking like a big boy #marianojonell #beaniehair

#bromance they love each other so much!!! #marianojonell #jjandnanoboy

That smile 😊 he was such a happy baby. He started to look like a big boy... I miss you Nano. My angel πŸ‘ΌπŸ» #marianojonell

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

MOST RECENT

#thankful for my son #marianojonell
His strength and courage has been absolutely amazing. He is so loved and not just by us. All the love and prayers sent to him, I cannot begin to explain how much it means to me. I give the Lord thanks and praise for all glory belongs to him! Thankful for all hard times and my blessings, especially the blessing of my child. I miss you son! #imokpapa
#thanksgiving2015

To the 1% out there, you volunteered to lay your life on the line. Some have given that sacrifice to support and defend our Great Nation. Because your selfless service, strength and patriotism I have been able to provide my son with that very same freedom you took an oath to defend...
To my battles, who I now call family! You will always have a special place in my heart. I got ur six any day.
Most especially because like your unwavering sacrifices you made to protect our country, you do so much to help, love and remember Nano! For that I too am grateful!
#oneNationUnderGod
I'm no hero, but my son sure isπŸ’ͺπŸ‡ΊπŸ‡Έ #marianojonell

That smile 😊 he was such a happy baby. He started to look like a big boy... I miss you Nano. My angel πŸ‘ΌπŸ» #marianojonell

A great day to #rockoutrett in Marysville. Thank you Ana for organizing. What a wonderful way to honor your son! #curerett #marianojonell

I felt my sons presence today!πŸ™πŸŒ» I’m sitting down for dinner. I made a grilled cheese sandwich and creamy tomato soup.
As I bite into the grilled cheese sandwich, I thought to myself, β€œoh you gotta pray”.
Lol everyone knows I do this and never felt shame.
So I continue my meal, then a sudden feeling...well it felt like someone came up behind me and hugged my waist. Like a toddlers arms trying to hug me..☺️
I look up to Nanos photo on the wall and think to myself β€œI felt that Papa, I miss you too”.
After I finish my food, I take my dishes to the sink. As I’m washing my dishes, I feel a tug at my pants around my ankle. I closed my eyes and smiled. And couldn’t help but think, β€œoh, Bomber I know that was you boy!”. I needed this... #MarianoJonell #Bomber
πŸ‘©β€πŸ‘¦πŸΆ #heavenisreal
#godisgood
#aboyandhispup
#aboysbestfriend
#theyhavebaseballinheaven
#nanoboyandbombet
#nanoboy
#luvnano
#thisisrett
#bomber

#rockoutrettchallenge
I challenge every person who sees this rock!

Let’s Cure RETT SYNDROME!!! #willyouhelpus
#marianojonell
#ripnano
#curerett

https://www.youcaring.com/boyswithrett-968699

#rockoutrettchallenge
I challenge every person who sees this rock!

Let’s Cure RETT SYNDROME!!! #willyouhelpus
#marianojonell
#ripnano
#curerett

https://www.youcaring.com/boyswithrett-968699

#Bwrett is having some fun at the pumpkin patch.
#marianojonell #imokpapa #adventureswithBwrett #curerett #curemecp2

#willyouhelpus
πŸ’œπŸ’šπŸ’œπŸ’šπŸ’œπŸ’šπŸ’œπŸ’šπŸ’œπŸ’šπŸ’œπŸ’šπŸ’œπŸ’šπŸ’œπŸ’š
#marianojonell #thisisrett #oneinamllion

I just want to be next to you again... I miss you so much, there not a second tha does by and I’m not thinking of you or missing you. I feel empty son, I no longer get to smell you or see that beautiful random smile or does big eyes of yours... I love you and miss you my Nano boy!! #thatsmiletho #bigboys #marianojonell #willyouhelpus #luvnano

When you show up to a tourney and see this πŸ€—πŸ€—πŸ€—πŸ‘πŸ½πŸ‘πŸ½πŸ™πŸ½πŸ™πŸ½ my son was love by a lot of people and still even after his been in heaven for a short amount of time he is still changing life’s down here on earth... #daddyshero #godssoldier #myangel #marianojonell #willyouhelpus #luvnano

I will continue to fight because no child should suffer the way you and your Rett brothers have! #willyouhelpus

#marianojonell

🎢Good morning, good morning, good morning to you! My Nano, my Nano, my Nano, woohoo! (Take his hands and put them in the air)🎡 I would wake up and sing you this everyday! Even sometimes sing it when I see you for the first time after work while you were in the hospital!
I wake up today and sing it again, only this time to your ashes and your photo. I can't wait to sing it to you when I come home. Save a place for me my Nano boy! I miss you! I love you son!
#marianojonell

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