The Argus, Wednesday, October 2, 2013 39

KEIRA ROYDS-JONES

LITTLE Keira Royds-Jones, six, from Hove, wasborn with a rare genetic condition called Alag-ille Syndrome

The illness, which affects just one in 70,000people, has left her with liver, heart and sightproblems.

As a result her bones are also dangerouslybrittle.

She was put on the transplant list at the endof 2011 and a liver became available the follow-ing year.

Since then she has never looked back.Her mother, Kirsty, 36, said: “She is a com-

pletely different child and we are so grateful tothe family who agreed to organ donation.

“I am in favour of the idea of opting outrather than opting in. It is a really good idea.”

Her courage in the face of advisory is some-thing we can all look up to.

A truly brave little girl.

BENEDICT MCALISTER

BENEDICT, six, was born with Ullrich congen-ital muscular dystrophy, a rare condition forwhich there is no cure.

The youngster's parents, Justine and Bruce,both 41, will have to watch as their boy's mus-cles continue to weaken and waste over time.

Frustratingly, scientists are in the very earlystages of developing a drug that could poten-tially stop the process of degeneration.

However red tape is likely to slow down theresearch which means they are still a long wayoff from bringing the drug to the clinical trialsstage.

Benedict is slowly coming to realise that he isdifferent to his school friends. But despite this,he makes the best of life.

LAUREN GANDER

LAUREN was born with spina bifidha and is aregular at the Great Ormond Street Hospital inLondon.

She defied medical experts who said she maynever walk and continues to battle the illnesscourageously.

The deformity in her back causes constantpain but she has remained positive and is deter-mined to help others worse off.

Last year the youngster was given the honourof carrying the Olympic torch in Rye and herfundraising efforts currently stands in excess of£300,000.

She also continues to excel at school and hasrecently been offered places at the prestigiousBrit School in London and Rye Studio School.

Mum, Linda, said: “Lauren is a lovely girlwith a bright future but one which doctorsfeared she may never have.”

HARRY FREEMAN

HARRY Freedman is something of a commu-nity champion on Brighton’s Bristol Estate.

Despite being just 15-years-old, the youngsteris forever helping out those in need.

Whether it is a spot of gardening, collectingshopping for the elderly or helping out in thecafe, Harry will be on hand.

His dad Raymond said: “He’s only 15 and jug-gles all his community work with his schoolcommitments.

“He is a really hard working and has recentlyimpressed on a work placement at Brighton andHove City Council.

“I’m really proud of him and think he is verydeserving of this award.”

HOPE JEFFCOATHOPE Jeffcoat was given just three months to live in 2009, butdefied medics by going into remission four years later.

The eight-year-old has a condition so rare it is believed toaffect only one in 20 million children her age.

Doctors at GreatOrmond Street Hospitaltold her parents to pre-pare themselves for theworst in 2009.

But the determinedeight-year- old camethrough years of bloodtests, chemotherapy andvarious types of medica-tion and is now activelyenjoying life to the full.

Her father Neil said:“We saw her doctors aday after her birthday inApril and we got thenews she was in remis-sion and did not have tocome back again foranother year.

“It was the best birth-day present she couldhave received. She is ourlittle miracle.”

Hope was one of theyoungest children in theworld to be diagnosedwith a form of vasculitis,called polyarteritis nodosa. This is an inflammation of the bloodvessels which chokes off the blood supply to major organs likethe kidneys or the gut.

She also suffered from juvenile systemic arthritis, which canlead to fever, pain and general debilitation.

Hope was having constant flare-ups and the condition wasbadly affecting her organs, leaving her seriously ill.

Mr Jeffcoat, 38, said: “It became so bad doctors said she onlyhad two to three months to live and we should prepare ourselves.

“We think it is a combination of the medication, our faith andher own strength that has helped her get through it.”

SOPHIE JORDANSOPHIE Jordan is only 13-years-of-age.

But despite her young years, she has shown the kind of dedi-cation and care most could never imagine.

She looks afterher mum whohas Scoliosis ofthe spine whichcauses herchronic pain.

With herg r a n d p a r e n t salso both suffer-ing ill health, sheis responsible forlooking after herfour siblings.

As well ascooking andcleaning she hasto all the littlethings most takefor granted –such as puttingher brothers andsisters to bed.

Her familyhave had a toughtime over recentyears but Sophiehas always beenthere to help.

As a result, shewould be excusedfor letting herschool work suf-fer.

But Sophie isan A grade student.

Jackson Hall, who nominated her, said: “Not only is she anabsolute star for caring in the way she does, but she is a fantas-tic girl with a lovely personality. We are nominating her onbehalf of the Association of Carers and cannot think of anyonewho deserves this award more. “

ETHAN HOLMES

LITTLE Ethan has had a tough start to his life.His brother died when he was four and he was singled out as

an emotionally disturbed child at school.After months of agony struggling to fit in, he was diagnosed

with sensory processing disorder, auditory processing disorder,dyslexia and hyper mobility in his joints.

But this was just the start of his problems.He moved from school to school, struggling to adjust. He suf-

fered bullying and his childhood years began to slip away.But through his determination and drive and thanks to a move

to a special school, Ethan started to turn the corner.His grades continued to improve, he met and made new

friends and his whole outlook had changed.Now school is broken up for summer, he can’t wait to go back.Ethan is an amazing little boy who refused to let his condition

get in the way of happiness. The future is very bright.

Carol Barnes Courageous Child of the Year