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Suffolk teen with mitochondrial disease celebrates 18th birthday

image copyrightLeigh Harvey
image captionTegan Harvey loved opening her 18th birthday presents, her mother Nicki Eley said

A "cheeky" teenager who was told as a girl she might not see her seventh birthday due to a rare genetic disease is celebrating reaching adulthood.

Tegan Harvey, 18, from Walsham-le-Willows, Suffolk, has mitochondrial disease, which causes seizures and affects her brain and muscles.

Her mother Nicki Eley said her "fighter" was "the joy of our lives".

She said reaching the milestone was testament to her "fantastic team of doctors" and her own determination.

image copyrightNiki Eley
image captionNicki Eley said Tegan was "non-verbal and non-mobile" and loved life

"We knew there were problems with Tegan not long after she was born, but it was at the age of six she was diagnosed with mitochondrial disease," said Ms Eley.

"The neurologist said he didn't think she would see her seventh birthday. The fact that we are looking at her 18th birthday is astounding.

"She is incredibly resilient, she is a real fighter and an incredibly cheeky person."

Ms Eley said suffering from seizures had always been her daughter's "biggest problem", which left her unresponsive.

image copyrightFamily photo
image captionTegan "adores" her sister Caitlin and brother Lucas

However, she was prescribed new medication in the summer and it had a "miraculous effect", allowing her to "blossom over the past few months".

To celebrate her 18th birthday, Miss Harvey's carer Georgie Luppi, 20, has created a pre-recorded online show called an "Evening of Joy". It features Miss Luppi and her friends from the National Youth Theatre singing and dancing.

"We sing and we laugh and she makes me giggle, like no-one else. We always have such a good time," Miss Luppi said.

"We are just two young girls having a laugh - that's all it ever feels like, which is lovely."

image copyrightGeorgie Luppi
image captionTegan Harvey's mum described her as "incredibly sociable"

What is mitochondrial disease?

  • It is an inherited illness that can be present at birth or develop later in life, often in young adults
  • The mitochondria are the engines of the body's cells and provide energy for all metabolic processes
  • It causes debilitating physical, developmental and cognitive disabilities
  • Symptoms include loss of muscle coordination, seizures, vision loss, hearing loss and organ failure
  • The disease is progressive and has no cure
image copyrightGeorgie Luppi/Nicki Eley
image captionThe show Georgie Luppi has put together is an "evening full of magic, music and celebrating Tegan", she said

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Related Topics

  • Family
  • Walsham le Willows
  • Children
  • Disability

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