Page 10, Wednesday, 25 May, 2011 Pakenham-Berwick Gazette

ThisKrystalwon’t

shatterKrystal Stevens has not had

an easy run. She suffersfrom a rare chromosomal

syndrome, called 18p deletion.Little is known about the syn-

drome and it’s so rare that thereare only five other recordedcases in Australia. While shelikes to consider herself unique,the Berwick resident says she’sup against the odds.

“Many people who have thesyndrome can’t work at all. Oth-ers can only work 30 hours perweek because they get tired soeasily,” Krystal says.

18p deletion syndromeaffects sufferers in a variety ofways. By looking at Krystal, thereis no indication that she is dis-abled.

Symptoms vary, and no twopeople with the condition havethe same characteristics. Thesyndrome is largely unheard of,which is something the eager 25-year-old wants to change. Krystalhas come along way in her fightto be heard.

“It is incredibly hard for some-one my age and height to findwork. At the moment I work atBunning’s Warehouse but it tookme four and a half years to getthis job.”

Krystal’s aspirations do notstop there, as she wants to workwith animals. Krystal says sheloves all animals, but is fascinat-ed by horses.

“I am really looking forward toeventually working in a veteri-

nary clinic and furthering mycareer to become a veterinarynurse. This will enable me to docertificate four in veterinary nurs-ing or work as a dog groomer. Ilove horses, cats, dogs and allanimals.”

Krystal is able to see thebright side of her condition, andsays that she is not affectedphysically by the syndrome,except for her stature.

“I don’t have the typical heartdefects or teeth defects, whichare common problems.Although I do I also have scolio-sis and kyphosis, however luckilythis doesn’t affect my ability towork.”

Some of the symptoms of18p deletion include delayeddevelopment, birth defects andneurological difficulties. Krystalexperiences a number of difficul-ties daily.

The syndrome manifestsitself in the way Krystal dealswith other people, and says herphobias and fears are whataffects her the most.

She describes herself as verysensitive and overly compas-sionate, and often adopts theemotions of those around her.Krystal’s frustration is obviouswhen she talks about specialneeds people missing out.

“I just don’t think it’s right toexclude special needs peoplebecause their disorders are dif-ferent or too rare to receive spe-cialist help. To me, they should allbe receiving the specialist fund-ing regardless of age or disability.It doesn't seem fair.”

Krystal says she is still learn-ing about her syndrome. Whileshe was diagnosed at age two,it’s only now that she is learningmore about herself, and her limi-tations. But she thinks it isimportant that people like herhave a voice, and be acceptedinto workplaces and social situa-tions. Her dream of working with

animals seems far off, as veryfew veterinary clinics are willingto give her a go.

“I am just as capable aseveryone else. To look at me, youwouldn’t know I have 18p dele-tion syndrome. I have a lot tooffer and I’m very studious.”

Last year, Krystal finished offher course at Box Hill Tafe, whereshe studied a certificate three inveterinary nursing. Since then,she’s been looking for a perma-nent job, while trying to find sup-port for her condition. She wantsto learn more about the syn-drome.

“I’ve turned to Facebook andfound other people with this syn-drome living all over the worldand in Australia”, she says.

While Krystal suffers from avery unique condition, her cam-paign to have all disabled peopletreated equally is not just for oth-ers like her. Instead, she is callingon the Federal Government toreview the funding for the BetterStart for Children with Disabili-ties program.

“My six-year-old sister hascerebral palsy, and she is not eli-gible to receive support from theprogram. I think it’s unfair thatage determines who receivessupport and funding”.

Krystal is appreciative of oneof her teachers, Kim, who helpedher through her recent Tafecourse. She says Kim is an amaz-ing teacher, and helped her to getthrough the bullying she wassubjected to.

"It was incredible to be soaccepting of me despite beingdifferent. Kim is an amazing

teacher, compassionate, caring,and considered and thoughful. Ireally wish there were moreteachers like her around that willdo anything to help studentsachieve their goals and dreams".

While most people will expe-rience bullying at some stage oranother, for Krystal, she hopesthat people learn to accept peo-ple who are different.

“I’ve been bullied all throughschool. I think people were jeal-ous because I was a hard workerand I got along well with theteachers”.

Krystal enjoys gardening,arts and crafts and everythinganimal related. It’s how shepasses the time while sheworks towards a career working

with animals. Another interestof hers is creating and designingcards for people, and she oftenfinds herself giving gifts tothose around her to make herhappy. She hopes that by raisingawareness of her syndrome,and other disabilities, she cantake away from the stigma thatpeople like her experience.

“Excluding people from thecommunity because of their dis-abilities seems really unfair tome. I want people like my sisterto be treated well and receivesupport like they deserve”.

Krystal’s condition may bevery rare, but her story is quitecommon. She’s a normal girlwith dreams and aspirations,who is fighting for her voice to beheard. Krystal has come a longway, and her passion for equalityshows how one voice can makea big difference.

By Danielle Galvin

Despite battling a rare and little-known health problem, Berwick’s Krystal Stevens has kept her eyes on the prize.

Krystal has always loved animals from a young age, pictured here witha horse named Marcus.

“I am just as capable as everyone else to look at me,

you wouldn’t know I have 18p deletion syndrome.

I have a lot to offer and I’m very studious.”

Krystal Stevens has come a long way and the young Berwick resident has a lot to offer.