I wanted to share a story. A story near to my heart and something that needs more attention. More because Neurofibromatosis (also known as NF) isn’t something that’s talked about, there isn’t a cure, there is no fixing it. You either live life day by day and you find the good in life or you allow life and people to drag you down by the outward look of you. This is so much more than just Neurofibromatosis(NF) this is anti-bulling.
Meet Aghust.
Aghust is (almost) 7 years old. We found out that Aghust had NF when he was little over 3 months old. Aghust chances of walking before 1 were not very high, talking also. NF causes learning disabilities and we vowed to give Aghust a fighting chance. Aghust was walking at 11 months. He walked into his genetics drs office, he was delayed on talking and started talking full sentence at 5 1/2. He has an amazing children’s doctor who amazes me every single time, Who truly goes above and beyond for him.
Thank you to his school who came along side me and gave Aghust a chance they worked with Aghust and he was finally released from speech therapy middle of his 2nd year of kindergarten this year. Aghust can now talk full sentences, correctly. His principle and teacher know Aghusts condition (which doesn’t define him) and they overly amazing, they push to give him the a great learning experience. I’m so grateful for everyone that has fought for him and knows his worth, even if sometimes he doesn’t know his own.
He recently told me that people have noticed his “bump” on his left arm. Kids make fun of him and tell him hes weird. Aghust is in kindergarten he will make your heart melt the minute you meet him and allow him to talk to you. Aghust loves meeting new people and having new friends. Aghust enjoys mindcraft, drawing, reading and playing outside with his big brothers. Recently there is one thing that makes his days darker that would be his NF. Being in kindergarten he is sad that people notice his bump, he hates his bump and wishes it was gone so he could be like a “normal boy”. As a mother my heart sank, Emotionally we have dealt with everything that has come with learning about NF making sure we are one step ahead of making sure Aghust has a chance at living a normal life even tho the odds of certain things are against him. We explain to him that hes perfect and i mean PERFECT the way he is. Hes such an amazing kid. As his mom i decided to capture his pain and hurt thru photography. I want people to see what it looks like when you have a 7 year old who is in Kindergarten wishing to be normal. When did it become about the way you look rather then the way you are? Don’t judge a book by its cover because you are bound to miss something amazing. And… Aghust is pretty amazing!
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You are beautiful. When I was almost 2 and broke my arm and the growth plate. The Dr was able to fix it so my arm would grow but I was in casts and my arm kinks to the side. I got made fun of in school because I couldn't throw right and was unable to do some of the things other kids could. That pain is scary. I'm sorry that you have to go through that aghust! You are beautiful and perfect. That you for sharing your story!!
Thank you so much. Hearing other people's stories makes him glad to know that he's not the only perfect person in the world. NF is non curable and as time goes on Aghust tumors will multiply. Im.so thankful he also wanted to raise awareness but let other people know words hurt.
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Big hug and all my love for you Aghust! He is a beautiful boy! We are all weird and that is a great thing because that makes us all unique and beautiful. Children that make fun of him will one day figure out they are weird too :D I would draw a little happy face in that bump and make it own it like a best friend. Our bodies are our best friends and since he is little, maybe that could switch the perspective for a second in a fun way and own his uniqueness. I hope there is not physical pain and that he grows to be a Unique, Beautiful and Strong Man . :)
You are beautiful. When I was almost 2 and broke my arm and the growth plate. The Dr was able to fix it so my arm would grow but I was in casts and my arm kinks to the side. I got made fun of in school because I couldn't throw right and was unable to do some of the things other kids could. That pain is scary. I'm sorry that you have to go through that aghust! You are beautiful and perfect. That you for sharing your story!!
Thank you so much. Hearing other people's stories makes him glad to know that he's not the only perfect person in the world. NF is non curable and as time goes on Aghust tumors will multiply. Im.so thankful he also wanted to raise awareness but let other people know words hurt.
Load More Replies... Big hug and all my love for you Aghust! He is a beautiful boy! We are all weird and that is a great thing because that makes us all unique and beautiful. Children that make fun of him will one day figure out they are weird too :D I would draw a little happy face in that bump and make it own it like a best friend. Our bodies are our best friends and since he is little, maybe that could switch the perspective for a second in a fun way and own his uniqueness. I hope there is not physical pain and that he grows to be a Unique, Beautiful and Strong Man . :)
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