Get involved: send your pictures, video, news and views by texting WO to 80360, or contact us here
Meet Freddie, the little boy who can't be hugged
A boy aged nine months, whose Watford mother is unable to hug him due to a rare skin condition, is "as delicate as a butterfly wing".
Freddie Algate, of Crossmead, was diagnosed with Epidermolysis Bullosa (EB) when he was born at Watford General Hospital last year.
His mother, Jenna Havlin (pictured), said none of Freddie’s family has the condition, which leads to very fragile skin that can break easily, resulting in painful blisters, open wounds and sores.
The 25-year-old said: "He was born with no skin on his hands and feet, and it took us 24 hours to find out what the condition was. None of us had seen anything like it before."
A consultant from Great Ormond Street Hospital had to be brought into Watford General to assess Freddie’s rare condition.
Ms Havlin said: "His skin was gone on his feet. It was down to the last layer before the muscle and his hands were just clusters of skin."
Freddie lives with his mother, his six-year-old sister, Sophie, and his father, Nick Algate.
There are many types of EB and while Freddie does not have the most severe form of the condition, he does have the most serious sub-type.
Ms Havlin said: "With his sub-type there are chances of living a normal life with the condition when he gets older, but it’s when they are younger they are the most delicate."
She added: "They say he is as delicate as a butterfly wing and with the condition, it’s all about prevention and managing it.
"I have to feel every bit of clothing to make sure it’s soft. I clean his blisters and dress the ones that are open. He has to wear bandages every day, which I dress myself.
"It’s like living a life of hell. While I think my child is well and there is nothing clinically wrong with his ability to do stuff, I can’t cuddle him and throw him up in the air and catch him like you can do with other babies. It’s terrible."
Ms Havlin, who has sought comfort and support from online community groups, said she wants to raise awareness of the condition and help those faced with the same challenges who do not know where to turn.
Freddie’s aunt, Victoria Algate, ran the London Marathon this year to raise money for Debra, a charity that supports those affected by EB.
To contribute to the charity’s work, visit www.justgiving.com/Victoria-Algate.
Comments are closed on this article.