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 many 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 has profound and complexed learning difficulties, she is non verbal and is unable to eat so she is fed via a gastrostomy feeding tube has low muscle tone, she also has scoliosis, severe sleep disturbance, low immune system and challenging self injurious behavioural outbursts.

 

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.

 

 

 

Thank you for visiting us, come again soon x  

You can contact us by email  

 

 emmam[email protected]

 

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