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Teenage boy worried about wearing a ball gown due to rare disease

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An 18-year-old who said she once feared wearing a dress to prom because of an 80-degree curvature in her spine said she wanted to be a voice for the next generation.

Macey Brooks noticed that she was different from other girls her age when she was only 12 years old.

The dancer said she could feel one of her ribs sticking out slightly, before a dance teacher suggested going to the doctors for a second look.

Macey was diagnosed with scoliosis at a critical time in her life and said she faced years of insecurity when growing up and didn’t see other people like her portrayed in the media or online.

The teenager, from Ashton-in-Makerfield, Wigan, said she “now embraces her imperfections” and wants to be a voice for other young people who feel insecure.

Before Macey’s diagnosis, she said she loved to dance and was very active.

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But when she was 12, she said she first felt a difference in her body.

She said, “When I was 12, I was in my room one day and noticed a little abnormality on my right rib. It was kind of a bit over the top.

“We went to the doctors and they said, ‘Keep an eye on it and see what’s going on, it might get better.’ Then about two weeks later, I was doing a dance move and my teacher pulled me into the office.

“She said listen, I think you have to go to the hospital because I think you have a little ripple on your right side. Me at the time being a 12 year old, I was just thinking ‘ oh my god i’m a rare breed.

“I was devastated and you are just thinking of the worst.”

Before and after photos of Macey Brooks' spine surgery, which was performed at Alder Hey Children's Hospital
Before and after photos of Macey Brooks’ spine surgery, which was performed at Alder Hey Children’s Hospital
(Image: Macey Brooks)

Looking back, Macey said she knew “nothing” about scoliosis – a lateral curvature of the spine that most often occurs during the growth spurt just before puberty.

Macey then went to Wigan Hospital, where she was confirmed to have all the symptoms.

She said, “My shoulders were uneven, my rib hump was there and I was told you could see the curvature of my spine as I bent over.”

Aged 12 to 18, Macey said she was then under x-ray surveillance at Alder Hey Children’s Hospital.

She was told about the surgery because at that age she had a 40-degree curve in her spine but was told it would be best for her to grow taller fully before an operation could take place.

This meant that during Macey’s teenage years, she said that she had the prospect of a potentially dangerous operation “hanging over” her and that she felt very anxious and different from her peers.

She said: “From the age of 12, I thought that at some point in my life I was going to have to have an operation.

“So it was always like a major insecurity for me, even the idea of ​​having an operation. At 12, you think I just want to be like everyone else.

“I broke down and it was overwhelming, I just didn’t want to go back to the hospital. I wanted to bury my head in the sand and hope it would get better.

“My curve started to get worse, at the age of 18 I had an 80 degree curve. In that short time, she had become severe.

“I was wheezing and every time I breathed it was constant. I was afraid people might hear it at school or wonder what it was.

At school, Macey said she believed there was increased pressure on social media to look certain.

She said, “The perfect image is dominant. When I was 12, I really tried to hide it.

“I would have my hair down for school, I would never want to do a PE because I didn’t want to wear a tight top. I would think if I tied them up people would think ‘oh my god, look at her back’.

“It never let me stop succeeding, but it was always a subconscious concern for me.”

Macey Brooks' spine as she recovers from surgery
Macey Brooks’ spine as she recovers from surgery
(Image: Macey Brooks)

Preparing for her prom, Macey said her insecurities made her want to wear her hair up and find a dress with a covered back.

She said, “Looking back, I wish I could say just accept yourself. If I could say anything to my 12 year old, it would be to accept it and show it.

“I couldn’t change it, it wasn’t going to go away. I wish I had the confidence to be proud and be who I am.

“It affected my confidence in a way that I would be so careful to wear dance costumes with an open back, or if the audience was looking at me.”

Macey has since had surgery to correct the curvature of her spine in January. The nine-hour corrective operation saw 20 pins inserted into his spine and three ribs removed.

Her spine is now straight and the pain will subside, she said, and she plans to start dancing again and go to college next year.

Macey wants to use her experience to talk to other people who may be living with scoliosis, and be that voice she didn’t have when she was younger.

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Through social media and other work, the 18-year-old said she wanted to raise awareness about the surgery, the symptoms and what scoliosis can be.

She said, “I am now on the road to recovery.

“My message is simple – have the strength and courage to embrace your imperfections.

“Be proud of your body and your scars as they tell your story and make you who you are.

“Remember that no one is perfect, that life is not filtered; so be grateful, don’t judge and be proud to be you. A smile can hide a multitude of battles, so be kind, always .



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