@mackenzies_eb_journey: We are heading to one of the top EB centers in the country to establish care for Mackenzie! We’re hoping to get answers about how best to care for our sweet baby girl, figure out the best ways to wrap and address her wounds, when and if to get her a g-tube. We want to know what to expect in the next year or two. We know they may not be able to answer all of our questions, but we’re hoping that this will be a helpful trip! And nothing like a good road trip to allow a lot of time to reconnect with my husband 💗 #epidermolysisbullosa #epidermolysisbullosaawareness #butterflybaby #specialneedsmom #fyp #specialneedsparenting #medicallycomplex #raredisease #babytok #roadtrip #indy #parenting #momlife #letsgo

Mackenzie’s EB Journey 🦋
Mackenzie’s EB Journey 🦋
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Region: US
Monday 30 June 2025 20:04:11 GMT
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_.sariterannavas2006
𝕊𝕒𝕣𝕚 𝕋𝕖𝕣𝕒𝕟 ℕ𝕒𝕧𝕒𝕤 :
"Sorry for the question, but with all due respect — until what age did the doctors say she might live?"
2025-06-30 21:19:58
7
creacionesligdijhon
creacionesligdijhon :
Dios te bendiga hermosa princesa
2025-07-01 03:27:57
0
merlyligdijhon
Merly Teran :
God bless you beautiful princess... how beautiful to see you happy
2025-07-01 02:04:01
0
ana_iisgii90
Ana iiGii90 :
coucou princesse ;*
2025-06-30 20:07:36
0
user5629398528288
Mom :
I have 2 nephews and 2 nieces with EB there is so much to know and do but the best thing you can do is love them
2025-07-01 04:38:50
0
cinderella4764
Cinderella :
my best friend had it. I got a butterfly tattoo for him. I knew him when I was in 1st grade him 2nd. 22 now. its amazing how time flys by
2025-07-02 02:16:25
0
captainnemesis2033
lastnamefirstname :
she's beautiful 🥰🥰🥰
2025-07-01 00:10:18
0
thriftymomma450
thriftymomma450 :
she is beautiful 😍
2025-07-01 00:20:59
0
chronicallymaria
Chronically Ria :
I hope you get some answers! ❤️
2025-07-01 02:50:11
0
desiree_kinsey
✝️🌺🌸🌻Desiree🌻🌸🌺✝️ :
Big prayers ❤️
2025-07-01 02:40:45
0
joanie.forcier0
Joanie forcier🦋 :
Mackenzie look really happy, it’s good to see 💜 I hope you will found some answer to you question.
2025-07-01 01:20:06
0
bonzaitzu
bonzaitzu :
Your family is gorgeous, sending many blessings and prayers for Mackenzie 🙏🙏🙏 she is so loved 🙏🙏🙏🦋🦋🦋
2025-08-09 13:40:27
0
user6537277301055
rgarcia🧿🕉 :
Praying for you all and they give you all the answers you need. 🙏🙏🙏
2025-06-30 23:28:45
0
knownwimsy.user
🍩𝒹𝒶𝓁𝒾𝓈 :
I hope you get all the answers you are looking for mama, beautiful Mackenzie girl is really moving more these days ☺️god bless you always !
2025-06-30 20:11:57
23
vtwin_addicted
vtwinaddicted :
she is so beautiful, and your the best mom😁❤
2025-07-01 00:15:43
0
kimberly_alike
kimberly_alike :
God bless you guys. Hope they’re ok can give you some answers.
2025-06-30 23:57:32
1
brookep1981
Brooke 🇨🇦 :
Following from Ontario Canada ❤️I'm a NICU nurse x have seen this twice so im Following to gain knowledge x because you guys are amazing!
2025-07-01 01:45:33
1
_.sariterannavas2006
𝕊𝕒𝕣𝕚 𝕋𝕖𝕣𝕒𝕟 ℕ𝕒𝕧𝕒𝕤 :
How months is she?
2025-06-30 21:18:19
1
mariacee2014
Mariia Cee :
Hi sweet Mackenzie!!❤️❤️look at her doing tummy time!!! 🥺❤️hope you get all the answers mama!
2025-06-30 21:36:20
0
puridiaz431
puri :
hay que bella la 🍼🍼🍼 dios la bendiga 🙏🏼🙏🏼🙏🏼🙏🏼😍😍
2025-06-30 20:14:26
0
calli_2010
Calli :
What would happen if she got a sunburn or if she had a cut?
2025-06-30 22:57:45
0
kyle56703
kyle56703 :
Bless this family 🙏 🦋
2025-06-30 21:53:51
0
deniseoboyle16
Denise O'Boyle :
So sweet 💕 hoping you get some answers
2025-07-01 14:08:59
0
_.sariterannavas2006
𝕊𝕒𝕣𝕚 𝕋𝕖𝕣𝕒𝕟 ℕ𝕒𝕧𝕒𝕤 :
When it's her Birthday?
2025-06-30 21:18:28
0
ralucaldn
RalucaLDN :
God bless you!❤️
2025-06-30 20:10:08
0
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