End NF!
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Have you heard of NF - neurofibromatosis?? It's a genetic condition that causes tumors to grow on nerves throughout the body. I'd never heard of it before my sweet 12-yr-old son was diagnosed with NF1 when he was 5. NF impacts 1 in 3000 and is more prevalent than cystic fibrosis, Huntington's disease, and Duchenne muscular dystrophy COMBINED. There is no cure, but there is hope. And my guy is doing well right now. I'd love to connect with other Poshers impacted by NF! Help me by sharing?
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123 Comments
krabon
@bbkin80 Thank you for sharing!! 😘
krabon
@posh Thank you for sharing!!
krabon
@shenneneilleen Thank you for sharing!!
krabon
@katefrancis Thank you so much for sharing!!
krabon
@nmurphy88 Sorry to hear that, but glad to meet you! Hope they're all doing well. Hugs and thank you for sharing my post! ❤️
krabon
@cboyd221 Thank you for sharing!!
krabon
@lovelylupuslady Thank you for sharing!!
krabon
@samjhengjosh Thank you for sharing!!
lovelylupuslady
@krabon no problem Karen
krabon
@leesquated Thank you for sharing!!
krabon
@khillix Thank you for the shares, and especially for sharing this post!!
khillix
You're more than welcome! He is one handsome kiddo!
krabon
@randikandi Thank you for sharing!!
randikandi
@krabon hi Karen. Absolutely my pleasure. My son has cerebral palsy...so I have a special place in my heart for yours. ❤️❤️❤️
krabon
@excitedcupcake Thank you for sharing!!
krabon
@randikandi And yours now has a place in mine. ❤️
randikandi
@krabon ❌⭕️❌⭕️ Karen. To u & ur son
daisypark
@krabon aw. He is adorable 💜💜
krabon
@randikandi ❌⭕️❌⭕️ to you and yours! 😘
krabon
@nicoleshier Thank you and thanks for sharing!! 😍
krabon
@adriannacantu Thank you for sharing!!
krabon
@nugget_love Thank you for sharing!!
krabon
@kelleysthreads Thank you for sharing!!
nugget_love
Thank you for sharing your story. Your son is so handsome and looks so happy. Sad to hear he has this disease. 😞.
krabon
@moonbunnytoo Thank you for sharing!!
krabon
@jennifernicoleb Thank you for sharing!!
jennifernicoleb
@krabon your son is precious!!! Thank YOU for bringing awareness to NF! Will be praying for your son and family!!!! Xoxo
krabon
@neelug Thank you for sharing!!
krabon
@zipper Thank you for sharing!!
krabon
@heathershu Thank you for sharing!!
neelug
Np! Happy to help you spread the word about NF.
tammysbeachwear
Hi:) never heard of this disease, so thank you for bringing it to my attention. Your son is adorable. Will share to help educate more poshers:)
krabon
@tammysbeachwear Thank you so much!! That means a lot to me.
krabon
@phykrist3 Thank you for sharing!!
jakeamom12
What a cutie pie! I'm glad he's doing well! I will keep him and your family in my prayers!😋😋😋💖💖💖
krabon
@jakeamom12 Thank you so much for sharing this post!! 💕
krabon
@sammykraus Thank you for sharing!!
sammykraus
Your son is adorable ❤️ you, him and your family are in my prayers
krabon
@kayduhh Thank you for sharing!!
krabon
@kalinobyl Thank you for sharing!!
heartmykids
Such an adorable angel!! Tugs at my heart strings... You and your son are in our prayers...
krabon
@heartmykids Thank you so much!! That means the world to me! 💗
krabon
@kategrace7 Thank you for sharing!!
krabon
@edamerval Thank to for sharing!!
krabon
@jjaquess Thank you so much for all the shares, and especially for sharing this post! Hugs!!
jjaquess
My pleasure! Same to you. ❤️
myurikayli
This is absolutely awesome! Me and my three siblings have NF as well!
krabon
@myurikayli I'm sorry to hear that, but so glad to connect! I hope you're all doing well! Have y'all registered with the NF Registry?
myurikayli
I have not im not sure if they have we live in two different states the actually have a camp called camp new friends in Virginia that the attend which is awesome! You should look into it! :) your son would love it!
krabon
@myurikayli I'll definitely look into it! Thanks!!
myurikayli
No problem :)
jjaquess
Oh, I'm so glad someone reached out! I had never heard of what your son has. I will try & remember to share often. 😊 I absolutely love kids (I teach kindergarten) & would do anything to support, encourage, love them etc. ❤️
krabon
@ssiyer Thank you for sharing this!!
krabon
@makayla_susan4 Thank you for sharing this!!
krabon
@jjl2013collins Thank you so much for sharing my post so many times!! 💗😍
mattietee
@mattietee. God bless you. I live children. I taught kindergarten for 32 years and miss it every day. My prayers are with you.
demitria67
@llaflamboy @liz3
demitria67
@mrscookey 💖💖
mrscookey
@demitria67 😘💕😉
mrscookey
@demitria67 lifting your child up in prayer🙏
mrscookey
My message was for@krabon sorry @demitria67
krabon
@mrscookey Thank you so much! I can't tell you how much that means to me. 💕💗💕
krabon
@luvsmink Thank you so much for sharing!! 💕
liz3
@alegria4rl @jakeamom12 @janbricker @alaskagem @dreamadj @lchouser @fuzzynavel
luvsmink
@krabon ...no thank you needed, at all. Bless your darling Son 🙏🙏🙏🙏🙏
krabon
@mattietee Thank you so much!! Your kind words and support mean so much!! 💕💗💕
krabon
@alegria4rl Thank you for sharing!! 💕
krabon
@liz3 Thank you so much for sharing!! 💕💗💕
krabon
@sammy Thank you for sharing!! 💕
krabon
@demitria67 Thank you for sharing!! 💗
krabon
@sobacat 💕Thank you for sharing!! 💕
liz3
@krabon of course! 💕
jjl2013collins
@krabon You are so welcome!!!!!!!!
sammy
@krabon Karen, I only know from working with special children which I can see that your incredible son is. My friends in LA have a son with CF and he is a teen and an awesome young man. Best of luck!!!! He is in my thoughts💓💓🙌🙏
krabon
@deniseejanet 💕Thank you for sharing!💕
krabon
@susyaccessories 💕Thank you for sharing!💕
krabon
@llaflamboy 💗Thank you for sharing!!💕
krabon
@msbuttafly Thank you for sharing!!💕💗💕
msbuttafly
@krabon 💜 You're so welcomed! Thanks for sharing my closet 💜
krabon
@elizabeth3374 Thank you for sharing!! 💕💗💕
krabon
@stephfret 💕Thank you for sharing!!💕
krabon
@miriamaquarium 💕Thank you for sharing!!💕
krabon
@mariamaquarium 💕Thank you for sharing!!💕
krabon
@ming2 💕Thank you for sharing!!💕
ming2
@krabon you're very much welcome. God bless you and your family!
chellbee65
@krabon so sorry to hear that yet another precious child and family must endure so much pain. So glad to hear he is doing great. My sweet nephew just recently gave up his battle two weeks before his 13th birthday to Ostia Sarcoma, bone cancer. It tears me up just knowing another child and mommy must battle such an insidious disease. My thoughts and prayers are with you, you are not alone.
krabon
@chellbee65 Thank you so much fit your kind words!! My thoughts and prayers are with your nephew and your entire family. Hugs!! 💗💗
chellbee65
@krabon Thank you for your thoughts and prayers but I am sad to say that my nephew already passed and is with our Good Lord and finally free of his pain. I wish your son a long life and hope that your family and loved ones are there for you in your times of need. I will pay for you and your little guy to recover and be a great man some day. I am here should you ever need a shoulder. Michell
luvmyqh6
@heartmykids Your son is so cute! My thoughts and good well wishes go to you your son and family! Stay strong! I'll be out here sharing you closet!! If I tag you on a following game join in it makes your closet grow and seen more get more sales!❤🐴
krabon
@luvmyqh6 Thank you so much for your kind words and support!! Hugs!!💕💗💕
dallize
I'm so sad to hear that your son has this disease i will pray for him and your family it hurts my heart to hear any child has to go through any kind of pain your son and family are in my prayers bless you ❤️
krabon
@dallize Thank you so much! Your kind words and prayers mean a lot to me!! 💕💗💕
dallize
Your very welcome dear please let me know if I can be of any help in any way take care dear and bless you and that precious boy ❤️
krabon
@susyaccessories 💕 Thank you so much for sharing this post!! 💕
susyaccessories
@krabon It's my pleasure 💕
missidoll
@krabon You and your son are in my prayers! It's so sad that moment when you find out that your son or daughter are not going to have the lives you would like for them! My dear nephew has Downs Syndrome, and I remember for days s
missidoll
@krabon the des said he would never make it to his teen yrs and he is 32, and much more advanced than they said he ever would be! So what I'm saying is, never give up! No matter what the Drs say. They don't know it all. When God steps in, Drs are lost!! Have a Blessed Evening!
sethjoanna
@krabon your strong, handsome son will now be forever in my prayers. 🙏💓Thank you so much for sharing and teaching me about NF. He's so lucky to have a supported mom like you:) if you ever need someone to talk to I'm here!
krabon
@missidoll Thank you so much for your kind words and prayers!! 💕😘💗💕
krabon
@missidoll And I'm so glad your nephew is doing so much better than expected! He will be in my prayers.
krabon
@sethjoanna Thank you so much for your prayers and kind words! It gives me hope and a bit more strength every time I get a positive message like yours. 💕💗😘💕
sethjoanna
@krabon you're so welcome! I wish the best for you, your boy, and your family! 😘💕
missidoll
@krabon Thank you😘 And your Son as well!
krabon
@mistyheart Thank you so much for sharing this post!! 💕💗💕
jewelry_party
I have heard about it. But your the first real person I've known that has a family member with it. I hope your son is doing well. He sure is a cutie pie! 💋
krabon
@mistyheart He is doing really well and we are so grateful!!
krabon
@tay57 Thank you for sharing!! 💕❤️💕
tay57
Thank you also, God bless your precious little man and you and your family🙏💞🙏💞
jewelry_party
Hi I want to showcase 9 of your items and I was wondering if you would make a Party Bundle? I'll tag you on the 9 and this is one of them. You can choose to either make each pic showcase your best shot of each item or use a picture program and collage all 9 into one for the covershot! I want to try something new here! This way you get 9 Host Picks and yet I only have to share 1 listing! I just chose my 9 picks/likes Congrats! Please Tag me when it's Ready! Party is 11/8 Ok and the listing has to be sellable, so just total the prices together and if someone is interested in just one item, you can refer them to your listing. Also mention each price in the description and use all 4 pics you have in a listing to really show off your stuff! IF YOU NEED ANY PICS TO HELP YOU OUT, THERE ARE A FEW POSHERS WHO HAVE MADE THEIR LISTINGS UP ALREADY AND I CAN TAG YOU IN THOSE LISTINGS! Make sure that you add in that you carry it in different sizes and if you have other colors of anything I liked you can mention the other colors.
krabon
@mistyheart Oh my goodness, thank you so much!! I will absolutely create the bundle and tag you. What a brilliant idea, by the way. I love it!! 😍
jewelry_party
The items I've chosen for Host Picks are : Spectacular, Unique, Showstopper, Statement Pieces. You can't go to your local department store and get these. This is what Posh Fest means. The Best of the Best! Let's Party!
keg90
@krabon 💗💗 sending hugs your way, I hope you connect & will continue to think positive thinks & health for your son. ❌⭕️ my oldest was taken from me in a violent death 6 yrs ago & I tell everyone to cherish the time they have with family & friends. Life is precious!
May your family be blessed & there be continued research & a cure !!💗💗 Kim / keg90
krabon
@keg90 Thank you for your kind words of support. I'm so terribly sorry to hear of your loss. Please know you are in my prayers. Hugs!! ❤️💗❤️
keg90
@krabon oh you are too kind, I just want you to know if I come across anything I will keep my eyes open 👀 ❤️ life puts us on a journey that we do not always intend & we often to keep stepping forward, as hard as it is 😢❤️ take care
krabon
@titocat Thank you so much!! 💕
beccas_boutique
My little brother has NF 1 ...its neat to see someone else familiar/struggling with the same thing!
ses54
Hi Karen! I just read the story about your Son's disease & would like to know if you could share some of his symptoms with me & how many doctors you went through before you finally had a diagnosis. Reason I'm asking is I have a genetic disease called "Familia Mediterranean Fever" well they "think" that's what I have. I've been through so many dr's it's pathetic just looking for answers. Lmk plz when you have time & God bless you & your Son. 🤗💕🙏
🌺Sherry🌺
alwayssparkle3
Hi! One of our dear friends have 2 of their 3 daughters with NF. I am glad your son is doing well. I am sharing this with my group!
krabon
@alwayssparkle3 oh wow! I hope they are all doing well. Thank you for sharing! Hugs!!
krabon
@ses54 Hi Sherry! I'm so sorry to hear that. I think we were "lucky" because our pediatrician knew the signs and because my son had so many indicators that were easily diagnosed with an MRI. We had a diagnosis within a week of when our pediatrician first raised her concern. I'm so sorry to hear you're struggling just to get a diagnosis.
krabon
@ses54 The primary indicator for my son were more than 6 cafe-au-lait spots on his andomen, and several others on his back, arms, and legs. That prompted an MRI, which revealed a plexiform neurofibroma (tumor) behind his left ear, and an optic glioma (tumor) on his right optic nerve. That was more than enough for a diagnosis of NF1. 😪
krabon
@beccas_boutique I just saw your comment. I hope your brother is doing well. Hugs!!
ses54
@krabon Awww I'm so sorry & thanks for your response. You're all in my prayers & hopefully someday I'll have a definite diagnosis but for now they are going with FMF. It's a mystery to all 30 doctors & specialists I've seen so far. 🙏🤗💕 Hugs 🤗
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