Mom’s Photo Project Proves Kids With Rare Conditions Are Still Kids


One special needs mom wants to remind the world that kids with rare conditions are first and foremost kids.

Photographer and mother Ceridwen Hughes, from Denbighshire, Wales, has a son with Moebius syndrome. Issac, 8, was born with the rare condition but did not receive a diagnosis until he was 8 months old.

Because Moebius syndrome comes with some physical characteristics, Hughes has seen firsthand how people make assumptions about her son’s abilities based on his outward appearance. Frustration with this led her to set up a community organization for people with rare conditions called “Same but Different.”

“[People] are often expecting [Issac] to have learning difficulties simply because he has facial paralysis,” Hughes told The Mighty in an email. “If people took the time to see the person behind the condition they would see what a funny, happy, determined little boy he is.”

Hughes decided to use her photography to help spread awareness and acceptance about rare conditions. She photographs a person and then supplies text telling their story. She includes what they like to do, who they are and how their condition affects them. The series is called “The Rare Project.”

unnamed
Heidi enjoys going to the cinema and eating out. She has Ehlers-Danlos syndrome.

“People often feel nervous or unsure about approaching people who look or act differently,” Hughes told The Mighty. “I wanted to find a way to bridge this gap and encourage people to find out more.”

unnamed-4
Natalia has partial trisomy 13, called Patau syndrome, and she loves music.

“I think the most important thing is that this project was inspired by my son, but it is not about him,” Hughes said. “It’s about anyone with a rare disease and the need to highlight the person behind the condition whilst using the arts to make it easier for people to find out more.”

See more photos from “The Rare Project” below: 

static1.squarespace
Isobel and Abigail are twins and they both have Down syndrome. They are full of life and happiness and often get stopped by strangers who want to compliment them.
unnamed-1
Isabel was diagnosed with encephalitis at 13 months and chocolate milkshakes are one of her favorite things.
unnamed-2
Iwan is great at jigsaw puzzles and has Dravet syndrome.
unnamed-3
April has Hurlers syndrome and loves mud and puddles and paint and anything where she can make a mess.
http---prod.static9.net.au-_-media-2015-11-22-09-43-2211_rare_sp
Tomos loves playing Fifa with his oldest brother. He has spina bifida myelomeningocele.

“The beautiful photographs remind us how precious life is and help raise awareness about children who are living rare diseases so that we remain compassionate and committed to their care,” Kym Kilbourne, Vice President of Patient Advocacy at Global Genes, a leading global rare disease advocacy organization, told The Mighty via email. “Story telling through these images leads to greater understanding of the children in the rare [disease] community, and we hope inspires greater progress toward treatments and cures worldwide.”

Visit the Same But Different website for more on the photo project.

 

 


Find this story helpful? Share it with someone you care about.


Related to Rare Disease

The Superhero ‘Cape’ You Wear as the Parent of a Critically Ill Child

Recently, I found myself staring at a black and white photo on Facebook. I had never met the people in the photo in person, but I knew them. I knew their story. I knew how much strength was in them. Even though most people would never have to know that strength, I also would never [...]

5 Tips for Medical Professionals Caring for My Children With Rare Illnesses

Doctors are taught, “When you hear the sound of hooves, think horses, not zebras.” In medicine, the term “zebra” is used in reference to a rare disease or condition. Doctors are taught to assume the simplest explanation is usually correct to avoid patients being misdiagnosed with rare illnesses. Doctors learn to expect common conditions. But it [...]

The Things I’m Sorry and Not Sorry About Regarding My Daughter’s Genetic Disorder

A dear close friend of mine is having a “surprise” baby at 43 years old. Her husband said to me what most expectant parents say, “Well, just as long as it’s healthy.” And I’m pretty sure I said the same thing when I was pregnant with my first daughter. But it’s just not true. You [...]

My Illnesses May Be Invisible, but the Intolerance I Face Isn’t

Although hours have passed since the ambulance rushed the usually spirited girl to the hospital, she has yet to wake, but her family is there waiting and praying. She’s barely 25, but these daunting hospital stays have become routine, albeit no less frightening for all present.  For nearly 10 years, she’s faced multiple rare and [...]