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Fundraiser for Yarmouth boy

PUBLISHED: 18:00 24 June 2010 | UPDATED: 18:06 30 June 2010

Little Sonny Docwra was born apparently perfect - the only hint that something might be wrong being a constant stream of colds, infections and runny noses.

Little Sonny Docwra was born apparently perfect - the only hint that something might be wrong being a constant stream of colds, infections and runny noses.

Now his family's life is set to become a costly round of operations, isolation and chemotherapy following the devastating diagnosis that he suffers from the most severe form of a rare and incurable disease.

Having first despaired his parents Donna and Matthew Docrwa of Southtown have been told by doctors that a bone marrow transplant may prolong his life.

Without it life expectancy is just six to 10 years. Doctors say they have already found a good stem cell match and that the operation will take place in Manchester as soon as possible.

Meanwhile at 20 months old it is becoming more obvious that Sonny is failing to meet the developmental milestones, like taking his first steps, that other children his age are achieving.

Sonny's life-limiting condition - MPS 1 Hurlers Syndrome - is caused by his body's inability to make a certain enzyme which over time causes damage to his organs, skeletal defects and eventually affects the heart and brain.

His grandmother Jackie Speed, of Tan Lane, Caister, is co-ordinating a fundraising effort to ease the financial burden on the family who are having to travel to hospitals in London and Manchester and take time off work so they can split-shift the time they spend with Sonny and his older brother Jay, aged seven.

Mrs Speed said: “He was very susceptible to respiratory infections and that is what first alarmed us. As a baby he had a stream of chest and throat infections and just seemed generally sickly. He was admitted to hospital with bronchial problems, they started doing some tests and this was the outcome. He is a gorgeous little boy and quite sturdy and healthy at the moment. He loves his dinners but cannot walk yet.

“He will give you the odd word but that is all. It is such a strange condition with some peculiar symptoms that must be uncomfortable for him. He has a lot of diarrhoea and his nose runs constantly.”

For the last three months Sonny has been attending Great Ormond Street Hospital in London for enzyme replacement therapy. Now he can receive some treatment at Gorleston's James Paget Hospital after staff there received specialist training from GOSH, such is the condition's extraordinary rareness.

Sonny will be blasted with chemotherapy to destroy his own bone marrow. After the transplant the new bone marrow takes around three months to engraft during which time he will be kept in isolation, his parents dividing their time between home and hospital, while dad Matthew tries to fit in his scrap-yard work too.

Mrs Speed said the whole prospect was “frightening” given that there was a chance that Sonny may not pull through. To help the family cope with the cost of having a child in hospital for at least three months a family fun day is taking place at the Lichfield Arms in Southtown on Sunday July 18 from 1pm. Mrs Speed is appealing for raffle, auction and tombola prizes. Any excess money will be donated to the MPS Society for use in future research.

To help contact Mrs Speed on 01493 377818 or email Jackie@jsspeed.co.uk. Find out more about the family's plight via www.sonnysfund.co.uk.

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