Baby Harry's story

Some parents would consider a quiet baby a blessing, but for Steph and Chris it's another reminder that there's something different about their son Harry.

Harry will soon be two years old and his EB has already claimed the top of his windpipe. He needs a tracheostomy to breathe and as a result no air passes across his vocal chords and so there is no sound when he cries in pain or laughs with delight.

Harry's EB is thought to be Junctional, the most serious type of EB, but so far tests are inconclusive. This rare form of EB causes blistering throughout the body and can be fatal in the first few months of life, but Harry is defying the odds and is battling against this cruel condition.

Harry's mum Steph tells us: ‘He is a happy, super little boy. So brave. His EB has taken all his finger and toe nails and most of him is blistered - the back of his head, areas of his face, ears, mouth, his belly - the list goes on. Despite all his pain Harry smiles all the time and we are so proud to have him as our son.'

The devastating affect of EB on Harry's skin is plain for all to see. ‘Harry must have spent more than half his life so far in hospital." says dad Chris whose involvement in Harry's care is essential given the 24/7 attention that Harry needs. Harry's dressings are changed every day and his tracheostomy tube must be cleared regularly throughout the day and the night. ‘It's relentless.' says Chris.

It's tough for young parents to cope with a baby, particularly a baby who has EB, but Steph and Chris also have to deal with people's reaction to their son. Chris says: ‘We shouldn't have to hide Harry away from other people but they can be very cruel. People stare at Harry and whisper about him, they think what he has is catching and pull their children away from him. It really gets to us. We've been accused of hurting him and called unfit parents. People just don't know what they're saying.'

Harry showed no signs of EB when he was born. At 4 weeks old his finger and toenails started to blister, then his face and ears. The hospital contacted DEBRA's specialist nurses and since then the couple have relied on DEBRA's help and expertise. Steph and Chris are firm supporters of the charity and feel it has been a lifeline for them. Steph tells us: ‘We don't know how we would have coped without DEBRA. All the dressings needed, what to do, how to hold him and comfort him without doing more damage, they've help with all this and more. We had a £100 grant from DEBRA last year to help with an unexpected bill which we couldn't afford; it took the worry away so we could concentrate more on Harry.

‘We don't know how long Harry's got but we'll keep trying to raise awarness of EB and help DEBRA. We'll do the best we can for Harry. He's crawling now and he tries to walk by holding onto the furniture. Stacking cups is his favourite game, he's brilliant at it. Harry keeps us going and his smile means so much. He means the world to us, if he's happy then so are we.'

Harry's story features in our spring appeal. Make a donation today and help DEBRA work with more families who are coping with EB.

The photo of Harry with Steph is used with the kind permission of the Bournemouth Daily Echo.