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Photographer Raises Awareness Of Kids With Rare Diseases In Striking Series

"Amara has a number of rare complex conditions, and the list is quite extensive."

Ceridwen Hughes hasmade headlinesover the past two years for “The Rare Project” ― a series of photos and stories of Welsh and English kids with rare diseases. Her latest series shows the rare disease experience in a new light.

Hughes photographed patients and medical personnel dressed up in evening wear while going through everyday scenarios for people with rare diseases ― like having surgery, meeting with a medical consultant or getting treatment. She calls the series“Rare Beauty.”

"When Sabah was 1 year old she was diagnosed with cancer in her kidneys which resulted in their removal and a need for regular dialysis.:

“With Rare Beauty, I wanted to encourage people to look at an image and want to know more,” Hughes told HuffPost. “In order to break down barriers it is important to engage with people, and to do that, you have to gain their interest. The thinking behind Rare Beauty was that people will be curious enough to wonder why the surgeon is wearing a dinner jacket or why an anesthetist is in an evening gown and read the story behind the image.”

She added, “I also wanted to inject some beauty into environments that by their very nature can be sterile and uninviting.”

"Isabella was diagnosed with Moebius syndrome at 8 months old. Due to her facial paralysis she struggles to be expressive but has her own unique way of showing when she is happy or sad."

Hughes’ work photographing people with rare diseases is inspired by her 10-year-old son Isaac who has a rare neurological condition called Moebius syndrome. “As a young child he was unable to walk, talk and we had to be incredibly careful with what he ate. Looking at him today and what he has achieved is inspiring,” the mom said, adding that he likes the same sorts of things other boys his age enjoy, such as soccer.

“I recently drove him to school and he was chatting away to me when he said ‘I am a chatterbox aren’t I mummy?’” she recalled. “They are words I never thought I would hear. He still has support in school, and because of verbal dyspraxia it sometimes takes him longer to process things. But he has such a strong personality and is very determined to overcome any obstacles.”

"One family who have benefited from the support of the chaplaincy team is Victoria and her son Rory who live in Birmingham."

Through her “Rare” project and experience with Isaac, Hughes has met some amazing medical professionals, who inspired her to highlight “the wider impact of rare disease” in her work.

“The effect of these often complex conditions can be far reaching, such as the families involved, the consultants in hospital who have to treat sometimes incredibly rare conditions or the nurse who might have to put on a big smile after having dealt with a difficult situation,” she explained. “With Rare Beauty I wanted to include some of the other people affected and tell their stories.”

"Olivia is 17 and does not have a diagnosis."

Hughes supplemented the photos withinterviews and personal stories from the people involved, including the families, medical staff and ecclesiastical team at the two hospitals. She hopes that sharing these stories will encourage people to support those with rare diseases in their own communities. 

To create Rare Beauty, the photographer collaborated with Birmingham Children’s Hospital, Alder Hey Children’s Hospital and BBC’s Children In Need charity. Hughes and hospital representatives worked together to identify patients, families, surgeons, consultants, nurses, chaplains, lab staff and other people who might like to share their experiences. 

"Once people know Olivia they see her cheeky attitude and see past her condition.  She has an amazing personality and just gets on with life because it is all she has ever known.”

“It was very important for the families involved to share their stories as they live with the consequences of these diseases on a day-to-day basis and recognize that with more awareness comes acceptance, said Hughes. “For the staff it was an opportunity to show that they do not always know all the answers but they work in partnerships with the families on their rare disease journey.” 

The patients ranged in age from 1 to to 18 years old and had rare diseases or undiagnosed conditions. Charlotte James boutique in Chester loaned them clothes, so they had a variety of outfits and styles. 

"Rory is 18 months old and was diagnosed with congenital nephrotic syndrome at one month old."

“The patients and staff alike had a wonderful time dressing up and taking part.  Even though the photo shoot was for a serious purpose, everyone enjoyed the experience,” said the photographer. 

With “Rare Beauty,” Hughes wants to raise awareness around the different challenges people like her son can face and how to support them. 

Said the photographer, “I hope that through these images people want to know more and consider the wider impact of rare disease. People assume that because something is rare it does not affect many people but this is far from reality.”

Ceridwen Hughes
Ceridwen Hughes
Ceridwen Hughes
Ceridwen Hughes
Ceridwen Hughes
Ceridwen Hughes

This article originally appeared on HuffPost.