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Page 10, Wednesday, 25 May, 2011

By Danielle Galvin

Pakenham-Berwick Gazette

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

This Krystal wont shatter


K
rystal Stevens has not had an easy run. She suffers from a rare chromosomal syndrome, called 18p deletion. Little is known about the syndrome and its so rare that there are only five other recorded cases in Australia. While she likes to consider herself unique, the Berwick resident says shes up against the odds. Many people who have the syndrome cant work at all. Others can only work 30 hours per week because they get tired so easily, Krystal says. 18p deletion syndrome affects sufferers in a variety of ways. By looking at Krystal, there is no indication that she is disabled. Symptoms vary, and no two people with the condition have the same characteristics. The syndrome is largely unheard of, which is something the eager 25year-old wants to change. Krystal has come along way in her fight to be heard. It is incredibly hard for someone my age and height to find work. At the moment I work at Bunnings Warehouse but it took me four and a half years to get this job. Krystals aspirations do not stop there, as she wants to work with animals. Krystal says she loves all animals, but is fascinated by horses. I am really looking forward to eventually working in a veteriKrystal Stevens has come a long way and the young Berwick resident has a lot to offer.

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

nary clinic and furthering my career to become a veterinary nurse. This will enable me to do certificate four in veterinary nursing or work as a dog groomer. I love horses, cats, dogs and all animals. Krystal is able to see the bright side of her condition, and says that she is not affected physically by the syndrome, except for her stature. I dont have the typical heart defects or teeth defects, which are common problems. Although I do I also have scoliosis and kyphosis, however luckily this doesnt affect my ability to work. Some of the symptoms of 18p deletion include delayed development, birth defects and neurological difficulties. Krystal experiences a number of difficulties daily. The syndrome manifests itself in the way Krystal deals with other people, and says her phobias and fears are what affects her the most. She describes herself as very sensitive and overly compassionate, and often adopts the emotions of those around her. Krystals frustration is obvious when she talks about special needs people missing out. I just dont think its right to exclude special needs people because their disorders are different or too rare to receive specialist help. To me, they should all be receiving the specialist funding regardless of age or disability. It doesn't seem fair. Krystal says she is still learning about her syndrome. While she was diagnosed at age two, its only now that she is learning more about herself, and her limitations. But she thinks it is important that people like her have a voice, and be accepted into workplaces and social situations. Her dream of working with

animals seems far off, as very few veterinary clinics are willing to give her a go. I am just as capable as everyone else. To look at me, you wouldnt know I have 18p deletion syndrome. I have a lot to offer and Im very studious. Last year, Krystal finished off her course at Box Hill Tafe, where she studied a certificate three in veterinary nursing. Since then, shes been looking for a permanent job, while trying to find support for her condition. She wants to learn more about the syndrome. Ive turned to Facebook and found other people with this syndrome living all over the world and in Australia she says. ,

teacher, compassionate, caring, and considered and thoughful. I really wish there were more teachers like her around that will do anything to help students achieve their goals and dreams". While most people will experience bullying at some stage or another, for Krystal, she hopes that people learn to accept people who are different. Ive been bullied all through school. I think people were jealous because I was a hard worker and I got along well with the teachers . Krystal enjoys gardening, arts and crafts and everything animal related. Its how she passes the time while she works towards a career working

I am just as capable as everyone else to look at me, you wouldnt know I have 18p deletion syndrome. I have a lot to offer and Im very studious.
While Krystal suffers from a very unique condition, her campaign to have all disabled people treated equally is not just for others like her. Instead, she is calling on the Federal Government to review the funding for the Better Start for Children with Disabilities program. My six-year-old sister has cerebral palsy, and she is not eligible to receive support from the program. I think its unfair that age determines who receives support and funding . Krystal is appreciative of one of her teachers, Kim, who helped her through her recent Tafe course. She says Kim is an amazing teacher, and helped her to get through the bullying she was subjected to. "It was incredible to be so accepting of me despite being different. Kim is an amazing with animals. Another interest of hers is creating and designing cards for people, and she often finds herself giving gifts to those around her to make her happy. She hopes that by raising awareness of her syndrome, and other disabilities, she can take away from the stigma that people like her experience. Excluding people from the community because of their disabilities seems really unfair to me. I want people like my sister to be treated well and receive support like they deserve . Krystals condition may be very rare, but her story is quite common. Shes a normal girl with dreams and aspirations, who is fighting for her voice to be heard. Krystal has come a long way, and her passion for equality shows how one voice can make a big difference.