A CHILDREN’S charity that gives vital care to a Bournemouth couple whose son has a rare life-threatening genetic condition has spoken of the difficulties it faces over rocketing fuel prices.

The Rainbow Trust provides emotional and practical support to Duncan and Claudia Collins and their twins Isla and Will, just two-years-old.

The children were born prematurely, weighing just over 2lbs, but Will has a condition called myotubular myopathy, which causes profound muscle weakness and particularly affects his breathing and swallowing.

One in 50,000 babies has the condition, but only one in 100 survives to the age of 10.

Claudia, who cares for Will full time at the family’s home in Boscombe, explained the importance of the Rainbow Trust to the family.

“Will has lots of issues and we have lots of appointments we have to go to. We can’t just get in the car and go anywhere.

“He requires oral suction and oxygen, so someone competent needs to be with him in the back,” she said.

“Pam is the lady that comes from the Rainbow Trust. She drives us everywhere because I can’t drive with Will. She’s lovely – you can tell she really cares.

“As well as the appointments, she will come round and she’s just like an extra pair of hands. She’ll keep Isla occupied and take her out to the park for me. Quite often we’re housebound, so Isla doesn’t get out that much.

“At times when Will’s ill, she will come in and sit with us. The charity really is fantastic and has helped us enormously.”

Will spent the first nine months of his life in hospital. He has to be ventilated overnight and cannot be fed by mouth, but Claudia says he has become stronger. “He was born so weak we were told to seriously consider letting him go, but we persevered. We’re hoping that talking and swallowing will come.”

With some experts predicting that petrol could cost £1.50 a litre by Easter, Anne Harris, director of care services for the Rainbow Trust, said: “We are very concerned about the rise in fuel costs.

“Over the past year, it has cost an extra £10,000 to provide the same amount of support to our families.

“While our core services are safe and secure, what it will force us to consider is our expansion plans, which has an effect on the families we would like to be supporting in the future. Demand for our services is rising.”

The trust is currently supporting 12 families in the area covered by NHS Dorset and seven in Bournemouth and Poole.