A young England fan whose skin is so thin it can blister to the touch got home just in time for his first World Cup match after spending his first weeks in hospital with the rare condition.
But now Louis has finally come home after three weeks in hospital, making it just in time for England’s first match in the World Cup – and to mark the occasion, his parents even got him a very special onesie for his "going home" outfit.
When their midwifery team spotted what looked like a burn on Louis’ leg, he was admitted to the hospital’s special care baby unit – which looks after premature and poorly full-term babies.
After some investigation, Louis was found to have epidermolysis bullosa (EB) – a rare skin disorder that causes the skin, both internally and externally, to be very fragile. The lifelong condition means that any trauma or friction to the skin can cause painful blisters.
Ms Moffitt said: “It was a real shock finding out. It’s super rare so we hadn’t heard of it before.
“But the support we’ve had at North Tees has been amazing – we wouldn’t be home right now if it wasn’t for the team up there.”
A specialist EB team visited the family in order to teach them about the special care that Louis needs. This includes how to safely pop blisters, dress his wounds and how to manage his pain.
The couple have been learning about the condition and how best to prevent break-outs by dressing the youngster in soft clothing without seams and taking care in how he is moved and where he sleeps.
Ms Moffitt said: “At first it was daunting – all the lotions and potions and different kinds of bandages – but now I feel a lot more confident. And dad is a dab hand at cutting the bandages. He stays up at night doing it so we’re ready.
“But Louis’ not just a baby with EB. He’s more than that, he’s a beautiful little boy and he’ll have every opportunity and be able to do anything he wants.”
On Monday 21 November, exactly three weeks to the day Louis was born, he left the special care baby unit and made the journey to his home in Yarm to join his big brother and sister – 11-year-old Sam and 2-year-old Willow.
Mr Baxter said: “We could not, for a second, fault the teams at North Tees and the specialist EB team who visited.
“They’ve not just looked after Louis but they’ve looked after us as well.
“And the team on the special care baby unit all got really attached to Louis and even got a bit emotional when he left. It’s a little family up there – they’re just too amazing to put into words.”
Janice Atkinson, ward manager on the special care baby unit, said: “We’ll miss seeing Louis’ little face but we know he is in the best possible hands with mum and dad.”
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