Photos Of Kids With Rare Diseases Show They're More Than Their Diagnoses

by Guest Mon Feb 29, 2016 7:49 pm

As Rare Disease Day approaches, people around the world are focusing on those whose lives have been affected by less well-known conditions.
UK-based photographer Ceridwen Hughes dedicates much of her work to shining a light on the lives of kids with rare diseases. Drawing inspiration from her son Isaac, who has a rare neurological condition called Moebius syndrome, the photographer raises awareness about different diseases through an organization called Same But Different.
Central to much of that work is a photo series called "The Rare Project," which features photos of Welsh and English kids with rare diseases -- along with their stories, as told by family members. The descriptions highlight what makes them special as kids, beyond their medical diagnoses.

Photos Of Kids With Rare Diseases Show They're More Than Their Diagnoses 56d0a4291500002b000b0c8f

CERIDWEN HUGHES/SAME BUT DIFFERENT

"Many of the families taking part have spoken of the isolation that rare diseases can have on them, and by taking part they have a platform that allows them to share their stories," Hughes stated in a press release for an upcoming fundraiser.
"When the general public hear the word ‘rare’ they assume it will not have an effect on them, but this is far from true as the statistics show," she added. "When a child is diagnosed with a rare condition it will ultimately affect that person, their family, the medical profession looking for ways to treat them, their teachers and the wider community in which they live."
In honor of Rare Disease Day on Feb. 29, here are 10 of Hughes' portraits of kids, along with their parents' descriptions.

1 Jake

Ceridwen Hughes/Same But Different
"Jake is a happy, sociable boy who loves meeting people. He loves his family and friends and thinks nothing of going up to strangers and hugging them. He loves music and his karaoke machine. Jake also has a fascination with water, so swimming is a favorite activity.

Jake has Angelman Syndrome. Jake has a severe learning disability and has complex communication needs. He needs help with dressing, toileting and everyday tasks. He also needs constant supervision to ensure his safety as he has no sense of danger."
2 Alex

Ceridwen Hughes/Same But Different
"Alex is utterly amazing. He faces such challenges in life (he cannot sit, walk, talk, grasp objects, feed independently), yet he is a happy little boy who loves nothing more than watching CBeebies and playing with his brother.

He is very social and loves interacting with people, in fact he is an outrageous flirt with the ladies! Everyone who meets him just adores him and he has the most infectious laugh which takes over his whole body when something amuses him.

Alex has glutaris aciduria type I. It is an inherited metabolic disorder (a genetic disease) which, if left untreated, can lead to brain damage."
3 Mari

Ceridwen Hughes/Same But Different
"Mari is a loving, caring and affectionate child who charms everyone she meets. She is really in tune with people’s feelings and can sense straight away if someone is upset or angry and her response straight away is to kiss, hug and ask them if they are OK.

Mari has Wagr syndrome, which is a rare genetic condition that can affect both boys and girls. Babies born with WAGR syndrome often have eye problems, and are at high risk for developing certain types of cancer, and possible learning delays."
4 James

Ceridwen Hughes/Same But Different
"James is a sociable, determined little boy who loves attention. He has an infectious smile and is generally quite happy. He likes people, going to school, music, all food, watching CBeebies, the iPad and he has a mischievous sense of humor.

He doesn’t like not getting his own way, staying still, when anyone has a conversation not involving him and being confined to his wheelchair/chair, which can make outings stressful. James has Coffin Lowry Syndrome."
5 Eddie

Ceridwen Hughes/Same But Different
"Eddie (Edward) is almost 8 months old, he is a beautiful baby and, recently, he has become a happy baby. His favorite things are bouncing in his chair, being naked and being in the bath -- he makes lovely happy sounds and smiles the most at these times. He has also recently discovered food and loves it!

A large porencephalic cyst was found on the left side of Eddie’s brain in utero at 35 weeks gestation. The initial diagnosis was porencephaly, a rare neurological disorder which can cause a wide range of neurological problems, from minor to severe. As the months have passed Eddie has been diagnosed with Cortical Vision Impairment, Right Hemiplegia and most recently Infantile Spasms (also known as West’s Syndrome). He also has silent reflux and a cows’s milk protein allergy, both of these are fairly common in babies, but for Eddie we now think they are what caused him to be an unsettled and unhappy baby in the early months."
6 Nina

Ceridwen Hughes/Same But Different
"Nina is an extremely affectionate, selfless, imaginative and gentle child -- shy to strangers but extroverted to loved ones. She has always had a very particular and unique interest in all things bird related, and loves reading books and playing 'pretend' with people she knows very well and trusts.

She dislikes light, loud noises, balloons, and finds it unsettling to be in small crowded places. She loves placing herself in other people’s shoes, and imagining fictional scenarios for those people that she acts out and adores hearing stories at night. Nina suffers from extreme photophobia and a variety of gastro-intestinal problems, and has development delay."
7 Percy

Ceridwen Hughes/Same But Different
"Percy is a very sociable little boy who loves attention. His two brothers are so close to him and he loves to spend time playing with them. His bubbly personality and bright smiles really make sure he captures the hearts of anyone he meets.

Percy has Prader Willi syndrome -- a rare genetic condition that, amongst other issues, causes the person who has it to have a constant desire to eat."
8 Alex

Ceridwen Hughes/Same But Different
"Alex is a very lovable and personable character. She has a knack of wrapping everyone she meets around her little finger. She is kind and has a very wicked sense of humor.

Alex loves spending time with her family, going out for coffee and watching the soaps and any reality TV. Alex has Leigh’s disease and idiopathic intracranial hypertension."
9 Lachlan

Ceridwen Hughes/Same But Different
"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.

Lachlan at present is one of only 5 children in the world with the neurological condition Periodic Hypothermia and the only child in the UK. Lachlan has three distinct temperature drops.

The impact on these temperature drops is considerable to Lachlan. 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."

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by eddie Mon Feb 29, 2016 9:14 pm

Bless those beautiful children X

Makes me feel so humbled when I'm moaning about stupid crap and these children are battling every day!

by Guest Mon Feb 29, 2016 9:16 pm

eddie wrote:Bless those beautiful children X

Makes me feel so humbled when I'm moaning about stupid crap and these children are battling every day!

It certainly does make me think twice Eddie.

x

by eddie Mon Feb 29, 2016 9:28 pm

Puts things into perspective.
Wish these things didn't happen to children didge. Really I do.

by Guest Mon Feb 29, 2016 9:32 pm

eddie wrote:Puts things into perspective.
Wish these things didn't happen to children didge. Really I do.

I wish the same Eddie, I truly do.

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