Sienna Rose is a beautiful, happy, determined 2 year old girl diagnosed with MCOPS12.

We started to suspect something wasn’t quite right fairly early. She had feeding issues, low muscle tone and limited use of her legs.

We were told that she had cerebral palsy, however after a clear mri they changed the diagnosis to global developmental delay. Finally sienna was diagnosed with Syndromic Microphthalmia 12 (MCOPS12), after extensive genetic testing.

MCOPS12 is an extremely rare neurological disease. This syndrome is degenerative, so without a cure her symptoms will continue to get worse. Common symptoms are severe (progressive) movement disorders, intellectual disorders, microphthalmia (small eyes with vision often affected). Other malformations are also common.

Sienna is one of approx 40 children in the world with this syndrome. While research has started for a cure, it is in very early stages. More funding is needed in research and development including safe testing and human trials.

We will be fund-raising to support this incredibly important research.

Please help us find a cure for our beautiful Sienna.

No donation is too small. 

For further information on mcops12 please see the website below

https://rarbmutation.org

Siennas Facebook page: A Cure for Sienna

Sienna’s Instagram page: https://instagram.com/acureforsienna?igshid=YmMyMTA2M2Y=