Parents of Terminally Ill Toddler Leave Their Home for Dream Vacation

A British couple won't lose a single moment with their terminally ill girl.

ByABC News
February 18, 2009, 12:54 PM

LONDON, 14 July, 2008 -- Ben and Emma Powell have a 3-year-old daughter who doctors say is unlikely to live beyond 12.

The couple from Birmingham, England, are distraught and heartbroken but refuse to waste a single moment with their daughter, Caitlin. The family is planning a series of dream holidays: Visiting Disney World, swimming with dolphins, hanging out in the countryside are some of the things on their list.

"She only has so long at this stage where she can enjoy herself," Ben Powell told ABC News. "So we decided to make the most of it and do something with her and not waste any time."

Caitlin suffers from a rare, genetic disease called Sanfilippo syndrome, for which there is no cure or treatment. Symptoms generally include delayed development that is followed by deteriorating mental status.

First on their list is a trip next month to Disney World in Florida. Ben, 31, and Emma, 30, are planning to give Caitlin and her big sister a $12,000, two-week stay.

Emma Powell has given up work as a bank clerk to become Caitlin's full-time caregiver, while her father continues to work as an administrator. Caitlin shares a bedroom with 7-year-old sister Chloe, which becomes more difficult as her condition worsens. The Powells recently sold their two-bedroom house for about $169,000 and hope they can find something more suitable and affordable when they return from Florida, even if they have to rent.

The syndrome, also known as MPS III, is a genetic disorder in which the body is unable to break down some natural sugars. It can be symptomless in the first year. But as the disease progresses, the child can become hyperactive, lose the ability to speak and walk and eventually die.

The exact number of sufferers in the United States is difficult to calculate because they don't have to register but estimates are 1 in 70,000 (National Library of Medicine). In Britain, where cases are registered, only one in 80,000 children is born with Sanfilippo syndrome, according to Britain's MPS Society, a support group.

"At the moment, she's like a normal child," Ben Powell said. "She's really happy. But she's degrading internally."