We're praying for our Harley

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Saturday, July 04, 2009
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This is HullandEastRiding

An east Hull couple have been left devastated after learning their eight-month old boy could be suffering from one of the world's rarest brain diseases.

Eight-month-old Harley Norfolk may only live for a few years.

His parents, Jodie Plaxton and Mike Norfolk, of Weardale, east Hull, have vowed to make them as special as possible.

Harley is currently being tested for Alexander disease - a form of leukodystrophy.

There are fewer than 1,000 cases of leukodystrophy in the world and no more than 500 with Alexander disease.

Further tests are being carried out to determine exactly which of the 40 or so types of leukodystrophy types it might be.

In the last two months, Harley has suffered a series of fits.

Miss Plaxton and Mr Norfolk have been told Harley could even forget to walk and talk in an instant if he has a major seizure when he is older.

Miss Plaxton, 23, said: "Life expectancy could be 10 years, but it may be nearer four or five.

"They said he could learn to walk and talk but then just forget everything if he has a seizure."

Mr Norfolk, 30, added: "The condition has been described to us as a short-circuiting of the brain.

"The news wrecked our lives in an instant."

Harley has already been on life support three times.

Family and friends have also rallied round hairdresser Miss Plaxton and Mr Norfolk, a crane driver, who have had to take time off work because of Harley's condition.

A reggae night has already taken place and a fancy dress pub craw involving 45 people in Anlaby Road.was taking place today.

Miss Plaxton said: "They are helping us raise money for specialist equipment we'll need to look after Harley.

Bonnie Williams, of the United Leukodystrophy Foundation, based in Illinois, said: "It's very hard to find a doctor familiar with leukodystrophy, which is the hardest thing for parents.

"There's fewer than 1,000 people worldwide with the disease and it's so rare many doctors don't know what it is."

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7 Comments

  • Profile image for This is HullandEastRiding

    by Nicola, west Hull

    Sunday, July 05 2009, 9:51PM

    “my heart and thoughts are with you little Harley and all your loving family and parents , try staying strong take care and all the very best to you all XXXX”

  • Profile image for This is HullandEastRiding

    by Nikki, west Hull

    Sunday, July 05 2009, 9:50PM

    “my heart and thoughts are with you little Harley and all your loving family and parents , try staying strong take care and all the very best to you all XXXX”

  • Profile image for This is HullandEastRiding

    by Mr Jolly, Lives next door

    Saturday, July 04 2009, 12:25PM

    “My thoughts are with you all. Take care.”

  • Profile image for This is HullandEastRiding

    by paige plaxton, hull

    Saturday, July 04 2009, 10:45AM

    “fancy dress pub crawl in hull centre from 3pm today raising money for my gorgeous nephew harley, starting in admiral of the humber, round new and old town then up to witham. all donations will help thanks”

  • Profile image for This is HullandEastRiding

    by Nelly, Hull

    Saturday, July 04 2009, 9:55AM

    “Makes me feel really sad to read about children and parents in this situation.My thoughts will be with them today.”

  • Profile image for This is HullandEastRiding

    by Liz, Hull

    Saturday, July 04 2009, 9:24AM

    “Thinking of you and your family at this hard time.”

  • Profile image for This is HullandEastRiding

    by jeff, Hull

    Saturday, July 04 2009, 6:01AM

    “My thoughts and prayers are with you and your family.”

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