Fight EB: Freddie's story

When Jenna and Nick’s son Freddie was born with EB, he had no skin on his hands and feet. 

Freddie was rushed to intensive care. Doctors later diagnosed him with EB.

“Our whole world got turned upside down,” says Freddie’s mum, Jenna. “We’ve never heard of EB before.”

Specialist EB nurses, part-funded by DEBRA, were called in straight away.

Freddie was transferred to Great Ormond Street Hospital, where a specialist EB nurse showed Jenna and Nick how to care for Freddie’s skin.

“He spent the first year of his life on a pillow. If we touched him, his skin just came straight off,” Jenna remembers.

Freddie needs constant care.

Every moment of the day is affected by the condition, from dressing changes to protect his skin, to powerful pain relief.

“Things other people would take for granted, we have to doublethink about every day. Even brushing his teeth can cause damage as any kind of friction can cause the skin to blister.”

His parents felt completely overwhelmed.

Even in its least severe forms, EB causes lifelong disability and pain. Jenna had to give up work to look after Freddie.

Freddie’s mum and dad struggled with his diagnosis and worried about how they would cope financially.

DEBRA was able to help.

A Community Support Manager from DEBRA was able to visit Freddie and his family at home and provide practical, financial and emotional assistance. 

DEBRA provided support grant to buy a soft carpet for their living room so that Freddie wouldn’t tear his skin on the hard floor as he learned to crawl – a simple thing that made a big difference. 

As Freddie prepared to start school last year, DEBRA worked with teaching staff make sure they understood the impact of EB and were ready to provide support Freddie needs, like making sure he can use his wheelchair when he needs to – to minimise damage to his feet.           

Freddie is now five and enjoying life. 

Freddie is an active child, always on the go. His parents feel confident knowing they can call DEBRA whenever they need support.

“Without DEBRA we’d have been lost,” says Jenna. “They helped us when had nothing to help Freddie and they are always on the other end the phone if I need someone to talk to. DEBRA is always there for us.”

DEBRA provides lifelong support to people impacted by EB. 

Life with EB is so hard for Freddie and his family in the 5,000 people in the UK who suffer from the condition.

With your help, we can make sure no one has to face EB without support.

£32 could give a family like Freddie’s one month of life-changing practical and emotional support. Whatever you can give will make a great difference.

Thank you.