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Stunning Photography Series Sheds Light on Kids With Rare Diseases (PHOTOS)

The Rare Project

Raising a child with any sort of illness can be incredibly difficult, but parents of kids with rare diseases face a particular set of challenges. Not only do they struggle with the same fears surrounding their children's health, they also might struggle to find support and understanding from a largely uneducated public. That's why UK-based photographer Ceridwen Hughes started "The Rare Project" -- to shed light on these beautiful kids and their families.

Hughes was inspired to devote much of her work to raising awareness about the lives of kids with rare diseases when her son Isaac was diagnosed with Moebius syndrome. "People often make judgments based on what they expect him to be able to do and sometimes they do not take the time to get to know the real child," Hughes told us. "Isaac is funny, determined, bright, and really caring. Those who do not see beyond his condition are poorer for it."

That's why she decided to start The Rare Project, a series featuring photos of Welsh and English kids with rare diseases. "I want to try to break down some of the barriers that exist for those with disabilities and rare diseases in particular," said Hughes. "Often the person taking part in the project has never had a portrait taken before because they may be nervous or have challenging behavior. It does not matter what condition each person has, they are ultimately still people -- with their own likes and dislikes -- and they deserve to have a voice."

And after seeing these photos, you'll never forget a single one of them.

 

Image courtesy Ceridwen Hughes/The Rare Project

All images courtesy Ceridwen Hughes/The Rare Project

1Lachlan

Lachlan is one of only five kids in the world who suffers from the neurological condition periodic hypothermia, which causes body temperature drops despite outside weather conditions. "The impact on these temperature drops is considerable to Lachlan," his parents told The Rare Project.

"During a drop we have to try everything to increase his core temperature and it can take some time before it has an affect. After a drop he can be tired and lethargic. It can also make him feel dizzy, emotional, and clingy."

Still, Lachlan "is a happy little boy who loves all the usual things a boy his age likes including all things Lego. Outwardly you would never know that he has a rare condition!"

All images courtesy Ceridwen Hughes/The Rare Project

2Nina

Nina suffers from extreme photophobia, developmental delay, and various gastrointestinal problems due to an abnormality in her Adam 17 gene. Nina is the only known registered case in medical literature but still manages to be an "affectionate, selfless, imaginative, and gentle child" who loves "reading books and playing 'pretend' with people she knows very well and trusts." 

All images courtesy Ceridwen Hughes/The Rare Project

4Eddie

A large porencephalic cyst was discovered on the left side of Eddie’s brain in utero; since then, he's been diagnosed with cortical vision impairment, right hemiplegia, and West's syndrome (infantile spasms). In spite of these challenges, Eddie is still a "happy baby" who loves bath time and food!

All images courtesy Ceridwen Hughes/The Rare Project

5Percy

Percy has Prader-Willi syndrome, a rare genetic condition which causes people to have a constant desire to eat, restricted growth, and low muscle tone. Percy is also a "very sociable little boy" who loves attention and playing with his brothers.

All images courtesy Ceridwen Hughes/The Rare Project

7Jake

Jake has Angelman syndrome and suffers from a sleep disorder and severe learning disability which causes him to require help with everyday tasks such as dressing and using the bathroom. Music and using his karaoke machine are his favorite things!

All images courtesy Ceridwen Hughes/The Rare Project

8Mari

Mari has a rare genetic condition known as WAGR syndrome which can cause eye problems and learning delays, and increases her risk for developing certain types of cancer. At the age of 1 she went through a year of chemotherapy and surgery to remove seven tumors. Mari is also a "loving, caring, and affectionate child who charms everyone she meets" -- we believe it!  

All images courtesy Ceridwen Hughes/The Rare Project

9Grace

Among Grace's many issues are a brain injury called PVL (periventricular leukomalacia), sacral agenesis (which means her spine finishes above her sacrum), and a heart murmur. Her spleen is on the wrong side, she had a cyst on her lung which was removed, and her intestines were rotated at birth (this was remedied by a surgery when she was seven days old). Grace is known for her "smile and bubbly personality."

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All images courtesy Ceridwen Hughes/The Rare Project

10Matthew

Born deaf, Matthew was diagnosed with Crouzon syndrome at 12 months, a genetic disorder "characterized by the premature fusion of certain skull bones" which prevents normal growth of the skull. Though he'll need serious surgery in the future, he is "extremely happy, energetic, and has a love of all things football." Someday he hopes to play for Real Madrid or Manchester United!

All images courtesy Ceridwen Hughes/The Rare Project

11Natalia

Natalia has Patau syndrome, also known as partial trisomy 13. Ninety percent of babies born with this rare condition die by the age of 1; average survival time is two weeks or less. Natalia has defied the odds to become a happy girl who loves music!

All images courtesy Ceridwen Hughes/The Rare Project

12Heidi

Heidi has Ehlers-Danlos syndrome type 3, a collagen disorder that causes her joints to dislocate (as well as fatigue, chronic joint pain, and gastrointestinal problems). But she's still like every other little girl you know: She loves putting makeup on, getting manicures, and dressing up like Disney princesses!

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All images courtesy Ceridwen Hughes/The Rare Project

13Tomos

Born with spina bifida myelomeningocele (which affects 1 in every 2000 babies), Tomos is unable to walk or stand -- but that doesn't stop him from having a "great sense of humor" and loving the time he spends with his three older siblings!

All images courtesy Ceridwen Hughes/The Rare Project

14Isabel

Diagnosed with HSV encephalitis at the age of 13 months, Isabel suffered a stroke which caused extensive brain injury. Though she is nonverbal, she can communicate via the use of Makaton (and often asks for chocolate milkshakes and her snuggly!).

All images courtesy Ceridwen Hughes/The Rare Project

15Isobel & Abigail

While Down syndrome is not rare, the odds of having identical twins with the condition are around 2,000,000 to 1. Isobel and Abigail are "full of life and happiness" and don't let their condition hold them back in any way!

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