Hello. Im Paige Koch, Im 3 and live in Belfast with my mummy, daddy, big sister Aimee Rose, 5 and baby sister Chloe,1. Some of my favourite things are being tickled, being with my sisters (who both love me to bits) and having fun and family time in my hydrotherapy hot tub. And I love, love, LOVE Peppa Pig!
Paiges mum, Josephine tells the familys journey with mito:
Paiges health problems began with having seizures at five weeks old. A muscle and skin biopsy early this year confirmed that she has a complex 1 mitochondrial disease respiratory defect, but as yet the exact gene that has caused it hasnt been identified.
It impacts on Paige in lots of ways. She tires easily and has her good and bad days. One day she could be falling all over the place and on others walking around fine. Paige has both hearing and sight loss, cant to speak, needs a feeding tube, has weakness on her left side and muscle tightness in her left leg. She gets chest infections regularly for which she needs nebulizer and inhalers. When Paige takes ill, it knocks her back quite a bit - but she always comes back fighting.
Our hope for Paiges is that treatments and a cure may be found so that mito will have less impact on her life going forward and allow her to live a full life. The more research into mitochondrial function, the more chance there is for treatments to be found ... not only for mito sufferers like Paige, but for the millions with the common conditions known to be linked to mito too.
Please help us raise awareness and funds for research in any way you can, thank you.
Josie Koch, Paiges Mum