California woman, 23, crowd surfs and performs despite rare fragile bone disease

Sarah Mumper, 23, was born with fibrous dysplasia, a rare bone disease also marked by the 'cafe-au-lait spots' that have been visible on her cheek and neck since birth

Sarah Mumper, 23, was born with fibrous dysplasia, a rare bone disease also marked by the 'cafe-au-lait spots' that have been visible on her cheek and neck since birth 

When operations assistant, Sarah Mumper, 23, from California was just two and a half years old, she was diagnosed with McCune-Albright syndrome, or fibrous dysplasia, a rare disorder that affects the skin, skeleton and certain endocrine organs.

At first, Sarah's symptoms were subtle: the appearance of faint birthmarks, a slight limp, and a small lump on the right side of her jaw that her mother felt when putting the then-toddler to bed.  

Her bones were so delicate that simple tasks like going up and down the stairs could dislocate her joints. 

As she grew up, she became more active and despite being urged by doctors to refrain from playing any contact sports, Sarah ended up joining sports clubs for basketball, football, kickball and PE.

When she was just 10 years old, she fractured her left hip while playing dodgeball and was told she needed to prepare for surgery the following day. 

Sarah - who had by then been diagnosed with McCune-Albright syndrome - was petrified that that operation would be the first of countless over the course of her life, a fate some with her disease face. 

While she hasn't had to continue undergoing surgeries as he feared, Sarah has had to use a wheelchair since that first hip surgery.  

She once thought her 'life was over' but has gone on to overcome her fears, playing a major role in the Sacramento ballet's rendition of The Nutcracker, working full time, living independently and even encourage and inspire others with disabilities to pursue their own passions.  

As Sarah learned more about her disease as a child, she knew she was supposed to avoid contact sports to preserve her bones, but she struggled to fight her own active nature

As Sarah learned more about her disease as a child, she knew she was supposed to avoid contact sports to preserve her bones, but she struggled to fight her own active nature 

Although they likely knew quite early on in her life - by the 'cafe-au-lait spots' that speckled her skin - Sarah's parents broke the news of her disease rather slowly. 

'I don't remember there ever being a "big talk" or anything. I remember there were little conversations with my parents,' Sarah says. 

'It was like they addressed things as they came up, but they also addressed the major issues that may affect me later in life, so I was prepared.'  

Sarah was urged to avoid contact sports in PE and when playing with friends during elementary school, but that didn't sit very well with her.   

'Occasionally it worked, but most of the time the active kid in me couldn't help playing basketball with the boys, soccer or kickball at PE,' she says. 

Sarah's body was different from her peers' in other ways too. Like many girls with fibrous dysplasia (and some boys), puberty came early for Sarah. 

As young as two-and-a-half, Sarah's mother noticed a small lump in her daughter's cheek

Sarah remembers fearing other children wouldn't play with her because her disease made her different, but quickly learned she had a strong support network of family and friends. Pictured: with her grandma.

As young as two-and-a-half, Sarah's mother noticed a small lump in her daughter's cheek. Sarah remembers fearing other children wouldn't play with her because her disease made her different, but quickly learned she had a strong support network of family and friends. Pictured: with her grandma 

By age 10, Sarah was had to use a wheelchair much of the time after breaking her hip in a kickball game. During high school, she worried what opportunities her disability would block

By age 10, Sarah was had to use a wheelchair much of the time after breaking her hip in a kickball game. During high school, she worried what opportunities her disability would block

But she was as prepared for it as any young girl could be, thanks to her own curiosity.  

'I learned more about my disease the more we went to National Institute of Health's for the natural history study I'm a part of,' Sarah explains. 

'I actively wanted to be involved and learn as much as I could so I could take charge of my health and advocate for myself and now I'm hoping to be an advocate for those newly being diagnosed.' 

Because fibrous scar tissue grows inside her bones, Sarah's skeleton is weak and bends abnormally in places. Pictured: an X-ray of her fragile legs

Because fibrous scar tissue grows inside her bones, Sarah's skeleton is weak and bends abnormally in places. Pictured: an X-ray of her fragile legs

So she wasn't shocked when her periods became irregular and her limp more pronounced. 

But the disease was also getting harder to ignore. Playing dodgeball against her doctors' advice sent Sarah to the ER and she and her mother knew that it wouldn't be the standard trip most 10-year-olds would have faced.  

'I remember my mum and I being in the car driving home and we both were just in tears,' she recalls. 

'It felt like a death sentence because some people who undergo

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