Newspaper article Evening Gazette (Middlesbrough, England)

Life's Challenging but My Elizabeth Is Such a Loving Little Girl

Newspaper article Evening Gazette (Middlesbrough, England)

Life's Challenging but My Elizabeth Is Such a Loving Little Girl

Article excerpt

Byline: MARIE LEVY

AT first glance Elizabeth Gregor looks just like any other three-year-old.

But the Guisborough tot's life has been blighted by seizures, some even leaving her in intensive care.

Elizabeth was just six months old when she started having the seizures, and as she got older they increased in severity.

Her parents, Marie and Andrew, spent 18 months searching for answers and once even faced the frightening task of resuscitating their little girl.

Eventually they discovered Elizabeth had Dravets syndrome - a progressive childhood neurodevelopmental disorder characterized by severe epilepsy that does not respond well to treatment. Days later the youngster was also diagnosed with autism.

Marie, 35, said: "It was devastating because we knew she was never going to live a normal life. We don't know what's going to happen in the future because it's a life-limiting condition.

"She has been stable now for a year and a half but the seizures could come back at any time."

Marie, who also has a son, Daniel, six, said that although Elizabeth looks fine physically, her condition -which is so rare it affects just one in 40,000 children - has completely changed their lives.

The A&E nurse, turned full-time carer said: "We don't live a normal life. Everything is a challenge. We can't even walk around the block because she often refuses to walk and lays down.

"As a family we often have to split up so Daniel can go to events such as birthday parties. A family meal in a restaurant is something we would not consider because it is too much for Elizabeth."

Elizabeth's condition means she finds communication very difficult. She can only understand about 40 words and is unable to form friendships beyond her immediate family so she can be very lonely.

Marie said: "She has no sense of danger and would run in front of a car or jump into a pond. We just hope and pray she is going to improve."

Despite the difficulties she faces Elizabeth always has a kiss and a cuddle for her loved ones.

"Daniel is brilliant with her. …

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