We are Emma and Harry and we have a beautiful daughter called Rosie, who is currently 7 months old.

Becoming parents to Rosie has been the greatest blessing and surprise in our lives and when they say that the love that you feel for your baby is unlike anything else, they were right.

What was thought to originally be Canavans Disease, Rosie has been diagnosed with Combined Oxidative Phosphorylation Deficiency linked to the EARS2 gene, or else known as COXPD12, an extremely rare mitochondrial condition.

This condition affects how the body’s cells produce energy, especially in the brain. Without that energy, vital organs like the brain, heart and muscles can’t function the way they should.

Unfortunately, there is currently no treatment or cure available in the UK, and due to the rarity of the condition, Rosie’s fate is in the unknown.

So instead of focusing only on what we can’t control, we’re choosing to focus on what we can. We want to give Rosie the most beautiful life possible, no matter how long that may be. We want her to experience the world and to be surrounded by love every single day.

We want to make memories with her that we can hold onto forever, and to make sure that her life, however short, is full of warmth, comfort, and joy.

We have set up a GoFundMe page which will help us give Rosie the life she deserves, supporting her care, allowing us to create special experiences as a family, and giving us the chance to explore any possible treatments or trials that might help her.

We also want to push forwards to fund research into her condition and hopefully work alongside some charities to help other babies and children like Rosie have the best chance at life.

Every single donation, no matter how small, would mean the world to us. If you’re not able to donate, sharing Rosie’s story would help reach more people who might be able to help.

With all our love,

Harry, Emma and Rosie x