Parents of Terminally Ill Toddler Leave Their Home for Dream Vacation

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."

Once the family returns from Florida, they have a long list of experiences they want Caitlin to have. They have planned trips to amusement parks, Scotland and a West End show, to encourage Caitlin's love of dance. The family is also considering a safari and a trip to Lapland in Finland to meet Father Christmas.

They are hoping to build a sensory room with lights, music and soft walls and furnishings. Children with Sanfilippo syndrome gradually lose normal awareness and senses.

"She will be scared of the dark," Powell said of his daughter. "She could be a danger to herself. So we want soft walls and colorful lights."

Negative Reaction

Despite's the family's devotion to their daughter, not everyone is impressed. And the Powells said they are unhappy about the way they have been portrayed by the British media.

They set up a Web site (caitlinsdream.com) to raise funds for Caitlin's last years and to raise awareness of Sanfilippo syndrome. But some people have criticized the family as irresponsible and selfish.

"It sounds like a begging letter and it's not like that at all …" Ben Powell said. "We never expected it to be this big, just my friends' family and work parties to raise money but we didn't expect it to go national."

The family could not say how much money has been raised on the Web site.

The Powells believe that a few inaccuracies, in reports of the story, have led to a negative reaction from the public.

It has been reported, for instance, that they sold their house for about $500,000 and that Ben Powell quit his job as a high-flying sales executive. In fact, the house sold for considerably less and Powell is an administrator who's going back to work after the vacation.

"People have twisted it, saying we have sold everything and given up work and going on a big holiday," he said. "That's not what we're doing. It's a bit upsetting."