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.
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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