An author and photographer plans to launch a book celebrating the personalities of children with rare diseases, to showcase that they are so much more than their illnesses.
Ceridwen Hughes is currently fundraising the launch of Celebrating Difference – ‘a rare disease journey’ consisting a series of images showing the personalities of sick children.
According to Ceridwen, the emphasis of each image is on the child, in hopes of bringing out their ‘personality and positivity’ rather than focusing on their condition.
The images within the book are absolutely stunning. Ceridwen captures the happiness and determination of each child in striking photographs.
She wrote on BoredPanda: ‘With this book, we aim to make people more aware of what it means to be affected by a rare disease whilst giving them a stronger voice in their community.
‘Using powerful portraits to capture the person behind the condition and sharing as many stories as possible, we can make people think and look beyond their first impressions.
‘The joy and happiness of each child shines through whilst their families discuss their own personal rare disease experience.’
Ceridwen adds that she is a parent to a child with a rare disease. She was inspired to create the book after understanding the ‘isolation you can feel’ through having a child with a long-term condition, and she wants to help others understand they’re not alone.
She added: ‘We can’t take away the devastation that you feel on getting a diagnosis but perhaps we can show that there is light to be found in the dark days.’
Take a look at some of the stunning photographs below.
Izzy suffered a stroke
Izzy suffered a stroke and experienced extensive brain injury which has left her permanently disabled.
She suffers from multifocal epilepsy, hemiplegia with her left side being weaker, hearing impairment, auditory processing disorder, communication difficulty, development delay and has also been diagnosed with autism.
Ceridwen says: ‘Izzy is a very happy and affectionate little lady who loves to spend time with her parents, sisters, and pets. She is a huge fan of Disney films and watches them every day along with her dolls that match each film.
‘She is strong-willed and independent, she is absolutely perfect in our eyes and the sunshine in our lives!’
Jacob has X-linked Hypohidrotic Ectodermal Dysplasia
Jacob has X-linked Hypohidrotic Ectodermal Dysplasia. It affects his ectodermal layer which means he can’t sweat and so it is hard for him to regulate his body temperature.
Ceridwen says he is a ‘happy, lively little boy who loves being involved with everything’.
April has Hurlers Syndrome
April has Hurlers Syndrome, a genetic condition which affects one in 100,000 people and causes skeletal abnormalities and cognitive impairments.
She is a ‘brave and determined’ little girl, who is ‘friendly and quirky’ and ‘charms everyone who meets her’.
Charlie was diagnosed with MECP2 Duplication Syndrome when he was 15 months old
Charlie was diagnosed with MECP2 Duplication Syndrome when he was 15 months old. This is a duplication of the MECP2 protein/gene and it’s located on the XY chromosome.
Those affected by this condition usually have global developmental delay, are non-verbal and can be prone to seizures later in life due to the build-up of protein.
Ceridwen says: ‘All I want is for people to see Charlie as the little boy he is and hopefully treat him the same as every other child.’
Ryley has Cystinosis
Ryley has Cystinosis which means that his organs store the amino acid crystal rather than break it down like most people.
This means that because his body does not break it down, his organs get damaged. This can affect the kidneys, the brain, the eyes and the muscles.
He has medication every six hours to help him prolong his life.
Ceridwen describes him as being a ‘strong and determined little boy’.
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