Sunlight could kill N.B. brother, sister suffering from rare syndrome

SAINT JOHN, N.B. - An offer to pay for two "moon suits" for a young brother and sister with a rare photosensitivity disease has been a ray of hope for a family struggling to cope with the knowledge that sunlight can kill their children.
Jayce Hachey, 30 months, and her 14-month-old brother Nicholas were recently diagnosed with Rothmund-Thomson syndrome, a genetic condition so infrequent only about 300 cases have been written up in scientific journals.
Their mother, Rachel Hachey-McNally, said Tuesday she's thrilled that someone has offered to pay for the suits.
"It's wonderful," she said. "I spoke to Chris Rink from NASA and he is looking into where we can purchase them and doing all the legwork. We are just waiting for his email back."
The children were diagnosed last week at Halifax's IWK Health Centre, where their mother and father, Scott McNally, were told that any exposure to ultraviolet light, such as sunlight, increases the children's cancer risk.
A doctor at the IWK told them about moon suits that block out all ultraviolet light, but he didn't have a lot of information, other than they cost about $2,000 each.
After a story of the family's plight ran in the New Brunswick Telegraph-Journal, Kathy Hachey, the children's grandmother, received a phone call from a local man offering to pay for the suits when the family can get them.
"He said, 'I was reading the article in the paper and it broke my heart and I want to pay for these suits,"' Hachey said. "He said, 'I know there's a lot going on in the world with Haiti and everything but sometimes we have to help closer to home."'
Last summer, the family noticed that Jayce would get extremely red if she was outside, even in the shade. Her skin would settle down some when she was brought inside.
That, along with rashes, bouts of diarrhea and a failure to gain weight, sent the family on a search for what is wrong. Recently, Nicholas began showing the same symptoms of what they now know is a rare inherited disorder.
"It breaks my heart to think that was the last summer they will ever get to be outside," said their mother.
The young family lives in an apartment and doesn't have the space for children who have to be kept inside during daylight hours.
Many people have suggested calling the American reality TV show "Extreme Home Makeover," hosted by Ty Pennington, but they are not even sure if they would qualify.
"Maybe somebody could donate a piece of land," said their grandmother.
The family has been told been told they need to put a special coating over the windows to block out ultraviolet light and make sure not to use fluorescent bulbs containing ultraviolet light.