Grace was born on Friday, 13th April 2007. Grace was born with Smith-Magenis Syndrome (SMS). She also has a minor heart abnormality and thankfully it doesn’t cause her any problems.

Smith-Magenis Syndrome is a chromosomal disorder which is caused by a micro deletion on chromosome 17. Most children with SMS have developmental delay and moderate to severe learning difficulties. In infancy, low muscle tone, feeding difficulties, failure to thrive and frequent ear infections are common. Speech delay tends to be more pronounced than motor delay. Language comprehension is more impaired than expression.

At the moment Grace's development seems to be very delayed, she also has low muscle tone, severe sleep disturbance, feeding difficulties, frequent ear infections, behavioural outbursts and her speech is also delayed.

Despite these problems Grace never stops smiling and is loved by everyone that meets her.

We decided to build this website so that we can educate people on Grace’s condition and to raise awareness for Smith-Magenis Syndrome, a condition that affects 1 in 25,000 births.