By Josh Saunders
A woman married to a sufferer of the fatal ‘Elephant Man’ condition that means his bones and organs won’t stop growing says the disease doesn’t scare her.
Angie Richards, 34, from Dover in Delaware, USA, first met Brian, 33, on an online dating site seven-years-ago and says she was never put off by his deformities.
Brian has Proteus syndrome – an ultra-rare condition made famous by Joseph Merrick who appeared in a UK freak show and inspired the film ‘The Elephant Man’.
He has undergone 41 surgeries to help his quality of life and stop his bones from growing, including toe amputations, bone removal from his knee and most recently he’s had a lung removed.
But Brian’s toes grow back and a second kneecap forming above the original one.
With only 120 documented cases, his condition led to cruel bullying and all prospective dates were scared off, until he met Angie in 2010.
Now the love birds are approaching their fourth wedding anniversary.
Angie, a food inspector, said: “From his dating profile picture, I could tell he had something wrong but didn’t know what it was, nor did I care; disease and handicap, doesn’t scare me.
“Having a condition was not enough for me to think of Brian as a ‘no.’
“I grew up in an environment where you don’t care about what a person looks like, you care about who they are and how they treat others.
“Brian is very caring, loving man, early on in our relationship he drove three hours for my daughter’s birthday and even made her a woodwork penguin toy – which is her favourite animal.
“He can’t change his condition and didn’t choose it to happen, it was just luck of the draw.
“People asking questions never bothers me, but I have to bite my tongue when they point or whisper.
“As he grows older, things continue to change and he is gradually getting worse.
“Despite all of this is, he always has a smile on his face and is always optimistic, he never complains.”
Before meeting Angie online, Brian doubted he would ever find love.
Brian added: “When people meet me they normally like me for who I am, but don’t like how I look.
“But with Angie, she cares about the beauty inside not what’s on the outside.
“Before her I didn’t have a lot of emotions. I had to shut down to protect myself but now I’m learning to be able to talk about problems and tell her when I’m in pain.”
Since getting married, Brian has become a stay-at-home father to Angie’s nine-year-old daughter Samantha, helping her with homework and doing the school runs.
The family are now hoping to move away to a specially adapted home to suit Brian’s disabilities.
Brian said: “In our current home, I struggle to fit down the corridors with my crutches and can barely sit on the toilet or in the tub due to my bones.
“I’m looking to be in a peaceful place in my life.
“I just want somewhere adapted to my needs where I don’t have to duck when walking around and can live easier.
“After being diagnosed with Proteus syndrome I was given a life expectancy of between 16-18 years, but here I am, so I’ll keep fighting for however long I have left.”
Brian was diagnosed with Proteus Syndrome at three-years-old – the chances of being born with the condition are less than one in a million.
His condition was amplified during puberty when his bones grew at an increased rate and required many surgeries.
Brian said: “When I was younger, surgeons tried to destroy the growth plate in my knee because it was growing so large it was set to be a foot bigger than normal.
“But it didn’t stop, it regrew and another kneecap formed above it, meaning that I now have two kneecaps in one knee, so I struggle to bend because of it.
“With Proteus, no matter how much of the bone you shave down, it can grow back in shards, in multiple directions and even faster than before.”
At school, he was bullied and called ‘ugly’ and ‘Frankenstein’s monster’ which led to depression.
However, when he was 18-years-old, his mother encouraged him to embrace who he was.
Brian said: “I broke down in the doctor’s office, crying over a massive surgery scar on my knee that looked like a gash from a gang fight.
“My mum told me, ‘you’re just going to have to accept this is what happens’ and from there I stopped caring about what other people thought.
“There’s nothing I can do to get rid of it, so I either had to understand what it is and how it works or have a horrible, miserable life fearing what was going to happen.”
He is unable to work, due to his feet swelling to more than double in size and having a second knee-cap grow in the one leg that means he struggles to walk.
Alongside other internal issues, including heart problems, an enlarged spleen and one of his lungs that was removed two years ago.
Brian said: “My feet are hard and have bumps were the toes used to be, I’ve been unable to wear shoes and the only way I can walk is by treading on the sides of my feet
“Then my second kneecap also stops me from being able to bend, we’re hoping that surgery will help to relieve it and the get the tendon over my kneecap.
“The older I’m getting the more issues I’m having, we don’t understand what’s causing a lot of them but I try to stay positive.”
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