People that inspire and impress
RP is an inherited eye disease characterized by progressive vision loss. It typically begins with night blindness, narrows to “tunnel vision” and ends in blindness or near blindness. The timing and stages vary from person to person.
by Lisa Xenophondos
I’m passionate about raising money for research and finding a cure for RP because my sister, Rochelle, and now, her two young sons suffer from this disease.
When my sister’s first grade teacher noticed that Rochelle followed the walls of the room [in order] to exit rather than simply cutting across like the other kids to get out, she told my mother that Rochelle should get her eyes tested. Thus, at age 6, Rochelle learned she had RP.
Rochelle grew up accepting her RP. In fact, she would get annoyed that Mum would bawl her eyes out after each ophthalmologist appointment. My sister would say, “It’s no big deal. I’m used to it. Yes, I struggle, but I can still see.”
But in high school, Rochelle struggled. The mean girls in high school made her life hell. People took advantage of her because of her kind heart, and I couldn’t stand it! I became her biggest defender.
The girls in high school made her life hell. People took advantage of her kind heart, and I couldn’t stand it!
After high school, I made sure Rochelle got out. At night, we often had difficulties due to her poor vision. Once, a stranger on the street gave her a hard time because she ran into him. While Rochelle got embarrassed and tried to play it down, the bogan in me came out and I gave him such a mouthful–all about the effects of her eye disease. [Editor’s note: Australians use the term “bogan” to describe uncouth or unsavory characters.] I wanted him to have a dose of his own medicine for giving her the third degree at “not watching where she was going.”
Finally something wonderful happened. Rochelle met a Maltese named Chris. They had a fun, adventurous relationship–bowling competitively, dancing and sharing their hopes and dreams. Amazingly, Rochelle and Chris took an advanced scuba diving course and went thousands of feet under the sea. Wow! I couldn’t do that–but Rochelle could.They even traveled around the world, tasting each countries local cuisine and drinks.
In 2002, Rochelle and Chris married in western Sydney. Not once did my sister complain about her poor eyesight. She refused to let it get in the way of her having a quality life. I remember being so proud of her. She didn’t need me or anyone. She was perfectly poised and independent, taking the steps in her life to make her dreams come true.
In 2007, Rochelle had Liam. I picked him up and cuddled him. In absolute awe, his beautiful electric blue eyes stared right into my heart and soul. THIS was the moment, my heart melted and I fell in love, and from that point on out, I would do anything to protect him. A year later, Daniel was born and I felt the same way about him.
Liam’s beautiful electric blue eyes stared right into my heart and soul. THIS was the moment my heart melted and I fell in love, and from that point on out, I would do anything to protect this child.
Over time, I noticed “signs” in Liam. I prayed that what I suspected wasn’t true. A few months later, Rochelle took him to the ophthalmologist and indeed, Liam was diagnosed with RP. He was 4 years old.
Rochelle’s built in suffering over the years with this disease came out in tears as she ran out of the office with the news of this diagnosis. She felt it was her fault that she passed on this disease to her son. Words cannot describe the hurt and pain that we felt that week in our devastation. To make matters worse, Daniel, the car, bike and trailer-loving brother, was diagnosed with the disease too the following year.
I had to do something. I was so angry and frustrated.
More is known about RP now. Much more research is being done in comparison to when Rochelle was diagnosed. I wanted to funnel my energy into raising money for research. I want a cure! I want it so badly.
Before this happened, Rochelle shied away from having anything to do with vision-impaired groups. But we are united now in our efforts, actively participate in fundraising.
In 2012, we raised $6,000 through a raffle and generous donations for a nightclub event we hosted in a Sydney hotspot. In 2013, we organized a 14-km City-to-Surf run/walk event at Oz’s famed Bondi beach with a Sightfighters group and raised $3,000.
Rochelle doesn’t shy away from help now, and feels very empowered by what we have done in the face of this horrible sight stealing disease. We will continue to do so until Liam and Daniel and many other kids and families that have RP find some kind of cure.
If you’d like to get involved and join our mission, go to www.sightfighter.com.au
Bio: Lisa Xenophondos works as a beauty therapist and pharmacy assistant in Sydney, Australia. She has been married to her longtime partner, Nick, for fourteen years. Lisa is determined to spread awareness of Retinitis Pigmentosa wherever she goes in order to find a cure.
Helpful Links to Australian Vision Groups
Vision Australia http://www.visionaustralia.org/
Guide Dogs Australia http://www.youtube.com/watch?v=ZOQXdcVw_vE,
Retina Australia http://www.retinaaustralia.com.au/
The Save Sight Institute of Sydney, a research and ophthalmology center http://sydney.edu.au/medicine/eye/
Sight Fighters www.sightfighter.com.au.
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Copywrite © Lisa Xenophondos and Amy Bovaird, February 2014.