Faith's story Kleefstra syndrome - Jeans for Genes

Faith's story

Faith stopped breathing soon after she was born and her whole body went floppy.

After spending the first six weeks  of her life in hospital , she was diagnosed with the genetic disorder Kleefstra syndrome. Faith has just a tiny piece of gene in Chromosome 9 missing – but that missing piece of her genetic make-up is life changing.

Faith spent the first few years on her life in and out of hospital. Today Faith has epilepsy, delayed development, she can’t walk or talk and is susceptible to lung infections. She also has problems sleeping and is awake for long periods at night. She is currently being assessed for autism.

There are thought to be just 200 children in the world with this genetic disorder.

Faith, who lives at home with her mum, Donna, dad, Gary and her brother Fabian, will need lifelong support. Despite all her challenges, Faith remains resourceful. She shuffles around on her bottom and enjoys listening to music, being outdoors and going to the park.

Her mum says “Faith is very sociable, she wins the heart of everyone she meets. She is a strong character and quite funny. A happy beautiful little girl”