Betsy

News from Camp Sundown

Only one camp was held this year as efforts are being concentrated on the permanent facility which will open later this year. Two families from the UK were able to attend, one of whom – the Mir family were funded by the XP Support Group.

We also provided two volunteers for the Camp, Miriam and Mel. Below is Betty’s story of Camp Sundown as told to Miriam. Betty is the oldest living patient with XP.

Betty Wallace was one of two British XP patients to visit Camp Sundown in New York this July. Despite never having left the country before and a fear of flying, Betty overcame these worries and had what she describes as a once in a life time experience. She is keen to describe her trip in the hope that others may be encouraged to go in the future.

What were your main concerns about making the trip to Camp Sundown?
Having never left England before, the flight worried me more than anything. However, the air hostesses were really kind, and made sure I had everything I needed. It was a bit like sitting on a big train. I was also unsure about the food in the States, and whether it would disagree with me. In fact it was wonderful, and I enjoyed practically every meal. Lastly, I was afraid that the heat would prove overpowering, but the air-conditioning in every room meant that I was always comfortable with the temperature.

What were your first impressions of Camp Sundown?
At first, it all seemed so strange to me that it was difficult to make sense of anything. It was amazing to be with people who have to live similarly to me, it felt like coming home. Completely marvellous. On the first night we had to go outside to meet for the field trip. For the first time I can remember, I walked out of the door without my hat, gloves, scarf and sunblock. I didn’t have to bother with any of it. It had been years since I had gone out in England at night-time, and I felt free.

What was it like meeting other people with Xeroderma Pigmentosum?
Great. Suddenly I wasn’t the odd one out anymore, the only person having to worry about lights and sunblock. I don’t get to talk to many people at home, so I talked non-stop to everyone I met. And all the Americans I met were so nice…

Yes, I remember you flirting outrageously with all the men.
Only the ones in uniform. That baseball player was gorgeous. But everyone was so kind to me. I’ve also received letters from other campers since coming home.

What would you say to another person with XP who is considering going to Camp Sundown?
Go! Definitely! It truly was a once in a lifetime occasion. Even to someone without the condition it would have been amazing, but to me it was another world. I couldn’t believe something like that would ever happen to me.

What did you think of New York?
It was amazing. My hotel room was on the 23rd floor, and when I looked out of my window at night-time, I had the most incredible view of the city. All the buildings were lit up and looked like Christmas trees, and the taxis below were crawling along like ants.

My day in New York was a dream come true. I was a bit worried about going out during the day, but there was a huge storm and the sky was black by 3pm. I got in a cab and visited Ground Zero, Times Square, the Empire State Building, Central Park, Trump Tower, the Hudson River, a baseball stadium. And all in the middle of a great thunderstorm. It’s true what they say about everything in America being bigger! My taxi driver was so kind he charged me only $30 for a three hour tour of the city.

How has visiting Camp Sundown changed your outlook?
If I never do anything else in my life, I’ll know I did that. It was something I thought I would never do. I was a bit nervous when I visited the Owl Patrol in February, I didn’t really know what to expect and was worried about going out. However, next year, I will feel much more comfortable and can’t wait for the night-time activities.