PARENTS Zara and Tim Hogg have just one wish: to cuddle the baby they love.

But this most natural of all actions is impossible for the couple.

The moment their son was born, Harry was whisked away by nurses at Princess Anne Hospital in Southampton, who realised something was seriously wrong.

Zara and Tim, from Park Gate, near Fareham, had no warning that their second child would be anything other than a healthy baby and were devastated by the news.

For the first few days of his life, Harry's condition remained a mystery, but Zara soon realised he was suffering.

"Harry was crying in pain when I was trying to breastfeed him - I knew he was hurting."

Specialists from London's Great Ormond Street Hospital told the Hoggs their son was one of those with the condition called epidermolysis bullosa.

Now the family have adjusted their lives to make sure he grows up as normally as possible.

With help from community nurses, they tend to Harry's skin and give him morphine and other pain-killing drugs.

Harry, who came back home after a month's treatment at hospital, has to wear his clothes inside-out so the seams do not hurt him and his hands are covered by socks to stop him damaging his own face.

Tim, an auditor, now works from home and the couple's two-year-old daughter Ellie is spending extra time at a nursery.

But despite the setbacks, Tim, 46, and Zara, 32, say Harry is a happy child and they are growing more used to his problems.

Zara said: "It has been extremely difficult to come to terms with. Each stage we think of in his life fills me with fear - but we have just got to deal with this stage and not worry about the future."

A grant from the Earl of Southampton Trust will help pay for special lighting to help treat Harry but the Hoggs need more money to fund equipment for him including an air conditioner.

Zara says she would love to find some clothes for Harry to wear, which would have to be seamless and fasten at the front.

The Dystrophic Epidermolysis Bullosa Research Association (DEBRA) is a self-help group that provides grants to affected families and funds research. It is set to profit when Hampshire man Ray Rhoades sets sail for Bermuda tomorrow from Southampton to raise money for DEBRA. Spokeswoman Laura Pratt said: "Well within Harry's lifetime there should be an effective treatment for EB. We've done it in the labs - now we need to push for clinical trials."

Anyone interested in helping should call 01344 771961.

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