Zara, we call her Zara Zoo, is our sweet five year old girl who loves Peppa Pig. Last year we got the diagnosis of an incredibly rare genetic condition called Coffin-Sirus Syndrome. CSS effects the whole of the Central Nervous System, meaning that for every new milestone (sitting, standing) Zara has to work incredibly hard and with specialist support. Zara is frequently poorly, as the CSS also causes problems with her brain (epilepsy), bladder (frequent infections) and spine (mild scoliosis) which of course often cause set backs too. She also has great difficulty in digesting her food and often has periods of low weight and no energy.

Despite these many challenges, Zara is full of determination to reach her goals. With intervention, 80% of CSS children can walk by the age if seven. This is a challenging goal for Zara as she is also on the more severe end of CSS, but we’re still going to give it everything we’ve got!

Currently, Zara has specialist physiotherapy once a week for one hour with PTKids UK. It helps enormously with her development but also in building her own confidence, independance and sense of herself. We would like to up this to two hours and would love it if you could help support this. Zara has been through so much in her little life and still manages, effortlessly, to bring huge joy to everyone she meets. Thank you, Catherine and Steve