Kristen suffered breathing problems and fitting from birth and died eight weeks later.

As difficult as their lives can be, the family always try their best to get away on holiday for a week every year.

Paul said: “We don’t drink, we don’t smoke and we don’t have much of a social life so we do everything we can once a year to take the children to America.

“They speak the same language over there and have great access for wheelchair users.

“Money is tight at the moment and we might not be able to afford to go away this year, but if we can buy Stacey her new wheelchair it would make things much easier and would improve her quality of life enormously.”