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.
"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.
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."
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."
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."
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."
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."
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."
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."
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."
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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