My little girl Rosie is a real warrior.
Born with a rare, incurable, life-limiting neuromuscular disorder called Nemaline Rod Myopathy, the condition affects almost every muscle in her body making ordinary, every day tasks like smiling, eating, sitting, walking and lifting things almost impossible.
It’s reported that 66% of children born with Nemaline Myopathy die before the age of two. Rosie past that milestone on March 15, 2016 and I feel incredibly lucky to still squeeze her tight, look deep into her eyes and make memories together every single day.
Life since Rosie was born has been both terrifying and incredibly rewarding. Rosie going into respiratory arrest and dying in my husband’s arms before being resuscitated was horrific, but hearing the news that a secondary degenerative mitochondrial disorder certain to take her precious life had been misdiagnosed was nothing short of a miracle.
Life has presented Rosie with challenges that NO child should ever have to face. She’s trapped inside a weak body, reliant on others to help dress, feed and move her. But what Rosie lacks in physical strength she certainly makes up for in mind, sense of humour and spirit.
She is a warrior. My warrior. Making life a fun place to be. She brings love, laughter and the most beautiful singing voice wherever she goes and I need to share her beautiful soul with the world.
There is no cure for Nemaline Rod Myopathy, but I live in hope that by helping to raise awareness about this condition and money to carry out vital research, that one day I can see my little girl run around a park with her friends and live her dreams independently of 24/7 care.
I’d love you to be a part of our journey too.
Rosie’s mum – Lisa x