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'All we can do is make every moment matter'
LITTLE Jagger Curtis flashes the cheekiest smile before dashing off around his garden with his dog, Badger.
He’s just played a typical little boy’s prank on an unsuspecting visitor. But at first glance, he is just like any other six-year-old.
He loves trampolining, dancing around to his favourite song, Moves Like Jagger and a trip to the dump with his dad or watching the bin men is enough to provide hours of entertainment.
But beneath his fun-loving spirit there is a heartbreaking reality – Jagger will die from a fatal genetic disorder unless a cure is found.
Diagnosed with Duchenne muscular dystrophy, medics have warned that little Jagger is likely to rely on a wheelchair by the age of eight or nine. Devastatingly, his life will be cut short and he is unlikely to live beyond his 20s.
Saying that out loud is simply too painful for his parents, Jules Geary and James Curtis.
Jules, says: “Never as a parent should you have to prepare yourself for the likelihood that your child will die before you.
“People say you never know if a family will be involved in a tragic accident, but what is so painful is that we have been told this will happen to Jagger.
"Effectively we have been given a deadline and there is of course that dark cloud always looming over us.
"Jagger's such a funny, happy, little boy and he's always so positive. He's ever so brave.
“Somehow we have had to find the strength to get our heads around it and be as normal as we can so he can enjoy just being a little boy.”
The couple began to notice something wasn’t quite right when Jagger was not as advanced as other children.
Jules, 38, explains: “Ever since he was incredibly young all his milestones were really late, for example, his hearing and his speech and he didn’t walk until he was two.
“I did keep going to the doctors, probably about ten times in total, but they seemed to put it down to me being an anxious mother.”
However James, 40, a carer for his mum who has dementia, read a chance newspaper article on the train to London about a little boy with Duchenne muscular dystrophy and realised the couple had to insist on tests.
James, explains: “Absolutely everything was mirrored. Jagger sort of waddles and comes up and down the stairs taking each step at a time with both feet and the main sign was he also has unusually enlarged calves.”
Jagger was given blood tests and a sample of muscle was taken from his leg.
In November 2012, Jules and James were told the news they feared the most – their son had Duchenne muscular dystrophy.
The heartbreaking condition, the most common form of muscular dystrophy, affects mainly boys and is caused by a faulty dystrophin gene.
As a result the body doesn’t produce dystrophin – a protein that helps protect muscles.
Without it, muscle fibres start to break down and are replaced by fibrous and fatty tissue, causing the muscle to weaken.
The pelvis and legs are usually affected first, causing difficulty walking. Other muscles can be affected too and later in life the condition can become lifethreatening as it affects the heart and respiratory muscles.
Jules, says: “It was absolutely devastating.
"For us it was the worst case scenario.
"At that moment we knew our son’s life would be cut short and that is so hard to get your head around. It completely tugs at your heart. Statistically, you are looking at a life expectancy of late teens or early 20s because the heart is a muscle, and that will eventually, like all his muscles, give in,” she pauses.
“He will deteriorate, so eventually he won’t be able to do anything for himself.
“You start thinking of things like I’m never going to see my son get married or I might not see my son have a girlfriend or he may not be able to go to university.”
Around one in 3,500 boys is affected.
Normally the faulty gene is passed on unwittingly by the mother through her X chromosome, which is where the dystrophin gene is carried and it was established that Jules is a carrier.
Girls aren’t normally affected because they have two X chromosomes and the X chromosome that is normal prevents them developing the condition. But boys only have only one X chromosome.
As a result of the diagnosis, Jagger is under the care of a team of medical specialists in Southampton and though at the moment he can walk and even run, he will soon wear leg splints at night to help support his legs.
Each medical appointment, Jules explains, is a harsh reminder of what is happening to their son – a reality they momentarily forget seeing him so full of life.
For Jules and James though, who are remarkably positive, they prefer not to read too much about the currently incurable condition and avoid looking on the Internet.
Instead, they say they are lucky to have such a close family.
Shortly after the diagnosis they set up the organisation Jagger’s Journey to raise awareness of the condition as well as vital funds. They also raise money for the charity Muscular Dystrophy Campaign, which has pioneered the search for treatments and cures – something the family remain ever hopeful for.
Jules, says: “You have to keep positive and we have such an incredible network of friends. It’s heartwarming to know the community have been so supportive of Jagger.”
Unlike most families they dread looking too far into the future and instead prefer to make the most of family time.
They admit they rarely have dry eyes when they witness their son achieve the simple things most parents take for granted such as Jagger being awarded a swimming badge, watching him run at sport’s day, getting on a bike, kicking about a football with his dad or jumping about on a trampoline. As a result they have been inspired to start up their own business New Forest Camper Van Hire to encourage other families to enjoy the most precious moments. They also hope to introduce a wheelchair-friendly camper into their three-van fleet in the future.
“Jagger’s diagnosis has totally changed our perspective on life.
“It makes you cherish family time and all the small things.
“All we can do is live for now, make the best of each moment and take each day as it comes. That’s the only way to do it.”
For more information about Duchenne muscular dystrophy click here.
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