Parents of terminally-ill toddler have sold their home and quitted work to take her on dream holidays. Now Emma and Ben Powell live only for one thing: To make their daughter happy

A family's grievous waiting... - 12 / 07 / 2008 08:00

When parents Emma and Ben Powell were told by doctors their young daughter would not live beyond the age of 12, they were understandably devastated.

But they bravely decided to hide their heartbreak and instead made the ultimate to-do list for three-year-old Caitlin.

Emma, 30 and Ben, 31 have compiled a catalogue of dream holidays, exciting family adventures and fun-filled treats to ensure their remaining years with her are the most pleasurable possible.

They have sold their three-bedroom home for £100,000 and have quit their nine-to-five jobs to provide enough money and time for the busy schedule.

The youngster from West Heath, Birmingham, was diagnosed with Sanfilippo Syndrome last December.

Only one in 25,000 children are born with the condition, which attacks the brain, body cells and tissues, resulting in hyperactivity, sleep disorders, loss of speech, dementia and ultimately, death.

Emma, who has quit her job as a bank clerk to be a full-time carer, said: 'I can't think about the future with Caitlin, it breaks my heart.

'She won't be with us for very long so myself and Ben have made a conscious decision to make every day special for her from now on.

'We have sold our home in Birmingham and are renting a flat nearby which is far cheaper than our mortgage.

'The money from the house sale is going to be ploughed into this wish-list for Caitlin.

'Next month we are spending £7,000 jetting to Florida to visit Disney Land and hopefully swim with dolphins. When we get back, there are more treats planned.

'We want to go on mini-breaks to Scotland and Cornwall, to go to Alton Towers and Legoland and maybe even London to see a show.

'Also on the list is a trip to see Santa in Lapland and an African safari.

'The problem with Sanfilippo Syndrome is that the disease robs you of your senses so we also want to convert Caitlin's bedroom into a sensory room with special colours and soft furnishings for her to touch.

'Although the money from the house sale should tide us over for a while, in order to keep the list going as long as possible, we have set up a charity to receive donations.

'It's hard coping with the knowledge that our daughter is going to die before she is a teenager but this gives us something to focus on. Caitlin's happiness is our motivation.'

Salesman Ben was working full-time as an executive for a tool hire firm but he has now heavily scaled down the number of shifts to be with his family.

He explained that he and Emma would take care of their daughter, who is in the second stages of the disease, for as long as possible.

But in the next couple of years, the couple will need help from specialists at a local children's hospice.

Ben said: 'A Sanfilippo child appears normal at birth and develops relatively normally for the first year so we had no idea there was a problem with Caitlin.

'But as more and more cells become damaged, symptoms begin to appear.

'We were shattered when we were told she had the disease and that she wouldn't outlive her childhood but we are a close-knit family.

'Eventually Caitlin will need 24-hour care and the situation will get worse for us as her condition worsens.

'But the time we have left with Caitlin is precious, and we want to ensure that we have some happy memories of times shared with her.'

The Daily Mail