February is rare disease awareness month – a time to share stories, raise understanding and show acceptance.
Before having a child born with a rare condition, I never understood how a disability could affect your life, what it was like to live it every single day and how other people showing understanding, compassion and inclusion could help you to live the life you lead.
This disease brings uncertainty and challenges I never imagined we would have to face. We have to live with the fact every day his hearing is being taken away. We hold onto the hope that research develops and there is technology out there designed to help us, but it still doesn’t stop it hurting, knowing this is our future.
My son lives in a world where he can not see, a world that is designed for all the ‘seeing people’ that heavily rely on all the visual information they receive.
We have to work hard every single day to adapt the world that he lives in, bringing all the information to him. Allowing him to explore and learn in his own way.
But the hardest part of living with a rare disease is actually other peoples perceptions and attitudes.
My boy is non-verbal but shouts and vocalises the most fascinating sounds. He flaps his hands in enjoyment and excitement. He walks on tip toes and bounces. He may bang his head when hes upset. He sometimes sits in a ‘big buggy’ when we are outside. He wears a hearing aid in one ear. He is fed through a tube in his stomach. He may often close his eyes and they look different to yours when they are open. He explores with his hands, mouth and all of his other senses.
All of these things are our NORMAL. Maybe they seem weird or different to you. But to us this is our little boy.
He may face challenges but he is happy and laughs and smiles a hell of a lot. He is not suffering, he does not need pity. He sometimes needs help or adaptations, but he just wants to be included, he is WORTHY of that!
Don’t sit and stare, don’t tut or shake your head, don’t make rude remarks or make us feel uncomfortable. Ask questions, get to know his personality, spend time, learn and accept differences, offer help, support, advice or just be there to sit and listen.
Living with a rare disease can have a massive impact on a family, but we are determined to make it a positive one.
We are here to help Cameron live his best life, and as his Mother i’d go to the ends of the earth to ensure that.
I care for someone rare. The most amazing little boy who was born with Norrie Disease, but he is so much more than his condition.
Image shows Mummy and Cam on Holiday, sat by the pool in their swimwear. Mummy is hugging Cam pressing her face against his, whilst he is laughing.