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A Unique Child: Inclusion - Supporting ... Angelina

Lisa Massingham is delighted with the progress her two-year-old daughter, who has Sturge-Weber Syndrome, has made since she started nursery, she tells Sue Learner.

When Angelina was four months old, she had her first seizure. After days of tests, she was diagnosed with Sturge-Weber Syndrome, which damages nerves in the brain and causes tissue to calcify.

The syndrome causes epilepsy, developmental delays, glaucoma and partial paralysis in one side of the body and is characterised by a port wine stain, generally on one side of the face.

Doctors initially controlled the seizures with medication, but when they worsened Angelina's mother, Lisa Massingham, was told surgery may be able to stop the seizures, which were permanently damaging her brain.

The surgeon suggested a hemispherectomy, a procedure disconnecting the left and right hemispheres of the brain. He warned Angelina's parents that she would end up with a severe weakness down the left side of her body; that she would never be able to use her left hand for fine motor tasks, and that she would suffer a strong weakness around her ankle and the loss of the left side in her field of vision. Ms Massingham calls it 'the biggest decision we had ever had to make'.

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