All i want is a normal life – Northern Cape teen who has extra bones growing in her body speaks out

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This Northern Cape teen dreams of living a normal life but doctors have no answers for the extra bones growing in her body

SHE just wants to be a normal teen. All she wants to worry about at this point is getting together with her friends, playing with the latest gadgets, having fun dressing up, and playing her favourite sport – netball.

But at 18, Vuyelwa Magwana’s thoughts are centred around the pain she’s been living with since she was seven. The teenager has ball-sized growths all over her body, which are hard to the touch and make it difficult for her to wear dresses without drawing attention to herself.

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Born and raised in Utlhanang township in the Northern Cape, Vuyelwa craves a normal life.

A RARE CONDITION

She has abnormal bone growth where extra bones appear to be growing on top of her normal bone structure. She has lumps in different areas of her body.

“Her condition started when she was seven years old,” her mom, Masego Magwana (45), tells us.

As a child she was very active in sport and one day her mother got a call from her school telling her Vuyelwa had fallen while playing and was complaining about pain on top of her knee.

She took her to the hospital the following day to rule out broken bones.

“The doctor or who examined her took X-rays of her leg and at that time I wasn’t aware of anything, as the lump wasn’t visible to the naked eye,” Masego says.

The X-rays showed Vuyelwa had a bone on top of her existing bones.

IN CONSTANT STAN NT PAIN

“I grow bones on top of my normal bone structure. It all started when I was in n Grade 2. I noticed a lump on my right leg and it was very painful but I didn’t think much of it,” Vuyelwa says.

Before long, there was one protruding lump on Vuyelwa’s leg. Today, she has six visible ball-like lumps and an she still has no answers. “I think they are as big as a tennis or cricket ball. The one on my left leg is as big as a cricket ball annd and very hard. When you touch them, you can actually feel the bone,” she says. “They did not grow all at once. They came years apart. The one that is currently growing on my back started recently. They are not all over my body but at the moment I havve have six of them.” The ones at the top of her knee and the back of her leg are the biggest lumps she has. Throughout the year years she has been examined by numerous doctors, yet none of them can explain the root of her condition. She’s been in and out of Chris

tiana Hospital in the North West.

“Each time I go to the hospital I get sent back home with only painkillers to help me numb the pain, as I have n not yet been diagnosed. I have been tol told on countless occasions that I must com come back when I turn 18.

“The reason behind me coming back at that ag age is because they said bones stop growing grow then, and they thought these ones o might stop growing as well so t they would be able to remove them.”

In the meantime, she’s in constant pain. “When the bones start to hurt, we give her painkillers because we were advised to not give her any bone medication, as it might cause the bones to grow further,” her mom says. The pain is hectic, Vuyelwa adds. “I long to be normal like other kids and to be pain-free. I want to be able to play sport again. I can’t even play netball anymore because if I do, the pain at night becomes even more unbearable. Not being able to play any sport breaks my heart.”

A DIFFERENT TEENAGE EXPERIENCE

Vuyelwa is the eldest of three children. Her siblings, Rebaona (15) and Gontse (9), don’t have the condition. She hates that she’s different from other teens and has to constantly answer questions about her condition.

Masego wishes she could take the pain away. “As a parent, it’s sad to see my child in so much pain and to see her feeling out of place. She has stopped wearing dresses and wants to be in pants all the time.

“Even at school, other learners would mock her and call her double knees. Last year was extremely hard on her, which also affected her matric results.”

She’s changed how she dresses, lost weight and avoids being around her peers. “It is so sad because now she is growing up to be a young lady and wants to experiment with clothes, yet she feels like she doesn’t have much of a choice,” a distraught Masego says.

“Living with my condition almost ruined my self-confidence, but my mom is my biggest supporter and always knows how to lift my spirit up,” Vuyelwa shares.

Her mother tries her best to be a pillar of strength and reassure her that she is beautiful, that God knew exactly what he was doing when he created her and gave her this condition.

“I try by all means to be there for her, support her and tell her she will be just fine. I remind her that she is enough, beautiful and important, and no one has the right to make her feel less than that.“

HOPE FOR THE FUTURE

Vuyelwa had more X-rays done in February and last month went for blood tests in the hope of finding a solution.

“We’re hoping she’ll get an operation very soon so she can start to live like other kids,” her mom says.

“The doctors still can’t give us any information about my condition, its dangers or the cause, as they say it is something that is new to them and they are still trying to understand it,” Vuyelwa adds.

She finished matric at Tselaathuta High School and is now taking a gap year because of her condition.

She hopes doctors will be able to do something – find a cure or remove the extra bones.

“I hope once the doctors have found a cure or performed a surgery on me I’ll be able to go to university and study journalism. I enjoy writing and taking pictures, and I feel like this will be the perfect career for me.”

Her mom tells us her only wish is for Vuyelwa to get the help she needs so she can carry on with her life.

“This year she had hoped to go to university but that was put on hold. Since she turned 18, we are trying to get the help that was promised to her at this age. I trust and believe all will be well. She has really done me proud and I want to thank her for being so brave and staying positive.”

At the time of going to print, Vuyelwa Magwana’s doctors did not respond to questions about her condition.

-Drum


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