Portsmouth mum’s leap of faith for charity after discovering sons have rare disease

BRAVE Debbie Jones, with her husband Lance and their three sons, from left six-month-old Albert, Harry, five, and Jacob, two.  Picture: Sarah Standing (120485-5570)
BRAVE Debbie Jones, with her husband Lance and their three sons, from left six-month-old Albert, Harry, five, and Jacob, two. Picture: Sarah Standing (120485-5570)

Community health day planned to educate residents

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WHEN mum Debbie Jones noticed her son Harry could not run properly she became concerned and took him to the doctor.

The 34-year-old’s life was turned upside down after the boy, then aged three, was diagnosed with a rare muscle-wasting disease called Duchenne muscular dystrophy.

At the time of diagnosis in November 2010, Debbie and her husband Lance, 34, were also expecting their third child.

They were delivered a second blow when tests revealed Albert, now six months old, also had the disease.

Debbie, of Kingston Road, North End, said: ‘The condition is a cruel genetic muscle-wasting condition and gives a person an average life expectancy of 20.

‘My and my husband’s world fell apart when our eldest son was diagnosed with it.

‘It was like the whole world ended and we cried for days and days.

‘About a week later we found out I was pregnant with our third child.

‘Following tests and emotional decisions we were told our unborn baby was a little boy also with DMD – which was earth-shattering news.

‘Thankfully our second child Jacob, who is two, is fine.’

The family have been helped out by charity Muscular Dystrophy Campaign, which funds research into the condition.

To help raise money Debbie is taking part in a tandem skydive on February 29.

She will be taking part in the jump with 99 other fundraisers.

‘I am nervous about the skydive,’ added Debbie.

‘But it can’t be half as scary as what my sons go through.’

Debbie, who worked at a special needs school, first picked up there could be a problem when Harry was 15 months old.

‘I remember he didn’t sit up until he was 15 months old, but it wasn’t until pre-school we noticed he had a funny run,’ added Debbie.

‘I had heard of DMD because I had worked with children in a special needs school.

‘We took Harry in for a blood test and that was where it was picked up.’

Harry, now five, needs to take medication everyday to help keep the condition at bay, but as yet there is no cure.

Debbie said: ‘Harry has fatigue and he can’t run very well and he still can’t jump.

‘He gets very upset because he can’t do certain things.

‘He has steroids that make him more springy, but there’s no treatment.’

To sponsor Debbie visit justgiving.com/ deborah-jones4.