By Nathalie Bonney @nathaliebonney
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Videographer / director: Ben Derico, Ben Holland
Producer: Liam Miller, Ruby Coote
Editor: Sonia Estal
Born with a disease that means her body slowly absorbs the calcium designated for her bones, Natalia Villegas’ bones are slowly disappearing.
Natalia, 14, wasn’t diagnosed with Idiopathic Multicentric Osteolysis, or IMO, until she was two-year-old; and so little is known about IMO – there are only 100 known cases in the world – that there is currently no cure.
Also referred to as the ‘vanishing bone disease’, Natalia admits she is in constant pain but won’t let that stop her from living as full and independent a life as possible.
Natalia told Barcroft TV: “I’m in pain every day and every minute of the day so I kind of have to do something to get me distracted.
“Even if I’m having a tough day, I feel like I want to push through it because I don’t want the pain to impact the quality of my life. I just want my life to be as normal as possible.”
Natalia’s parents noticed that their daughter wasn’t reaching the physical markers she should have been when she was just a baby but it took a while to finally get a diagnosis.
Dad John said: “My wife noticed something was wrong at birth, but her concerns where dismissed as normal baby issues. At nine months we decided to look for answers beyond the paediatricians.
“We came to diagnosis after exhaustive research from nine months to two years of age when we found Shriners Hospital for Children, St. Louis.”
IMO typically first manifests itself in the wrists and ankles first before progressing into the rest of the body.
Mum Norma Villegas said: “Basically her body is absorbing the calcium from her bones and essentially making them disappear.
“It affects the smaller bones first so she’s got no carpal bones, no tarsal bones and there’s severe deterioration in her knees. Her shoulders and her elbows are basically held together by the soft tissue around there and the nerves.”
Natalia adds: “I am tired a lot because all my bones are putting pressure on something or that the skin and muscle are basically working to keep all my extremities together so the more I use them the more I’ll be in pain and tired.”
In her whole life, Natalia has not been able to walk more than 10 steps independently and since first grade, she has used a motorised wheelchair. Up until she turned 12, Natalia underwent extensive physical therapy but when it became clear she would use a wheelchair the rest of her life, the focus has switching to finding adaptive solutions for her.
Norma said: “It was getting very difficult for me to carry Natalia so we decided to add on to the house the wheelchair lift to at least give her the wheelchair access to her bedroom and give her some independence.”
Natalia goes to school every day and though she has to rely on her parents to help her get up in the morning, the whole family have adapted to try and enable Natalia to be as independent as possible.
Natalia said: “It does get a little frustrating but I think I’ve just been able to figure out a different way to be independent.”
For example, Natalia’s parents cut up her food for her so that she can feed herself; Natalia’s student support worker Mary opens doors and gets items out of Natalia’s schoolbag – but only steps in when asked to.
Mary explained: “Of course she prefers to be independent and I let her be independent unless she asks for assistance.”
One of the top students in her class, one of Natalia’s favourite subjects is art. However, just holding a 2B pencil can be a physical strain, so her parents invested in an iPad Pro with a stylus, which is lighter, and allows Natalia to use graphic art programs.
She said: “Something that distracts me is art. I like digital art: drawing on my iPad because it’s sometimes easier than drawing on paper, which gets me a little tired.”
Bowling is another activity that Natalia loves; she has joined the school team and uses a ramp to help her.
Natalia said: “I like bowling because it sort of gives me a place to put all my life struggles into and I don’t have to think about anything else while I’m bowling.”
A cure for IMO hasn’t yet been discovered but Natalia has been actively involved in several research programmes that have resulted in published papers on the condition.
She said: “Even though there may be people struggling with this condition, I feel like you should never let it affect you because there’s more to you than this disease.”