Camp Bush Baby gets to celebrate their 10th birthday with a bash

Ms Maryna de Beer shared her story about living with this rare disease.

September 10, 2021

Chrisuné Vermeulen 2 minutes read

The XP Bush Baby Society is an extraordinary circle for people with a rare genetic disorder that prevents the body’s ability to repair damage caused by ultraviolet light, which is called Xeroderma Pigmentosum (XP).

This means that even the smallest exposure to sunlight or other UV light can cause severe sunburn, ulcers and skin cancers.

The past weekend the XPS once again came together for a joyful weekend filled with laughter and no judgment as their 10th birthday party was held at Olifants River Lodge.

One of the main organizers of the event shared her story with WITBANK NEWS about living with this rare disease.

“I was diagnosed with XP at the age of 25 years old and at that stage, no one had a clue what the rare disorder was, so like everyone else I started to ‘google’ to find out more about what was wrong with me. It was when I came upon an international group where they had yearly camps for patients with the same disorder,” said Ms Maryna de Beer.

Her first camp was in America where she met children with the same disorder for the first time in her life.

“After the first camp, I was hooked and attended numerous camps afterwards and made the decision to arrange our camps on this side of the world,” she added.

The organization was registered in 2010 and the camping weekends started – except for 2020 due to Covid-19.

“Dr Du Toit van Rooyen who diagnosed me has also been with us from the beginning. We always need help for the kids, especially with transportation to camps. They also always need a lot of sunscreens. The camp is so important to the children that they are among others who are like them. The camp is also important for the parents; they support each other,” she concluded.

*For more information about this topic or how to go about contributing to this amazing cause, follow them on Facebook @ Xeroderma Pigmentosum Society South Africa.

HERE ARE SOME MORE PHOTOS OF THE BIRTHDAY BASH: