Home | News | World News | Ceridwen Hughes whose son has Moebius Syndrome photographs children with rare diseases

Ceridwen Hughes whose son has Moebius Syndrome photographs children with rare diseases

  • Ceridwen Hughes, 46, from Mold, North Wales, is mum to Isaac, eight
  • He has rare Moebius Syndrome which paralyses the facial muscles
  • Isaac is unable to smile or laugh and couldn't speak until 18 months ago
  • Ceridwen photographs children with disabilities to show the person inside 

By Siofra Brennan For Mailonline

Published: 03:29 EST, 26 November 2015 | Updated: 04:18 EST, 26 November 2015

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A photographer whose son suffers from a rare condition that leaves him unable to smile or laugh has launched a campaign to encourage people to see beyond the disability. 

Ceridwen Hughes, 46, is a mother to eight-year-old Isaac who suffers from Moebius Syndrome, which only affects around 200 people in the UK. He didn't walk unaided until the age of four and struggled to speak until 18 months ago.

Now, inspired by Isaac, Ceridwen has launched the Rare Project, photographing children with rare conditions to show their disability is only a small part of who they are.

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Ceridwen Hughes, 46, from Mold, North Wales started the Rare Project inspired by her son Isaac, eight, who suffers from Moebius Syndrome

Ceridwen Hughes, 46, from Mold, North Wales started the Rare Project inspired by her son Isaac, eight, who suffers from Moebius Syndrome

The photographer snapped twins Abigail and Isobel who both have Down's syndrome for her project. Although the condition itself is not rare, the odds of having identical twins with Down's is two million to one

The photographer snapped twins Abigail and Isobel who both have Down's syndrome for her project. Although the condition itself is not rare, the odds of having identical twins with Down's is two million to one

The girls' mother Jodi wanted them to be involved to show that Down's syndrome is not an illness. The twins are full of life and spend hours dancing along to their favourite music videos

The girls' mother Jodi wanted them to be involved to show that Down's syndrome is not an illness. The twins are full of life and spend hours dancing along to their favourite music videos

'When you or your child has a rare disease you can feel very isolated,' Ceridwen told FEMAIL.

'It can be a struggle from day one, not just in terms of getting the right medical help, but also because you are constantly explaining what the condition is and how it affects you. 

Ceridwen explained that when you meet other people in a similar situation, there is a bond and an unspoken understanding that brings you closer.

Ceridwen said: 'I recently met a beautiful young lady called Katja who has the same condition as Isaac and I have to admit I had to take photographs with tears in my eyes.

'She was so inspiring. I just felt she gave me hope and I knew that as difficult as Isaac’s condition is, it's not the be all and end all. It is only a tiny bit of who he is. 

'When you are given a diagnosis you immediately Google the condition. 

Katja has Moebius Syndrome, the same condition as Ceridwen's son. She can't smile, laugh or blink and has hearing difficulties - Ceridwen admitted to having tears in her eyes when she photographed Katja

Katja has Moebius Syndrome, the same condition as Ceridwen's son. She can't smile, laugh or blink and has hearing difficulties - Ceridwen admitted to having tears in her eyes when she photographed Katja

Ceridwen describes Katja, who recently gained her green belt in karate and her Piano Grade 2, as an 'inspiration' for reminding her that Isaac's condition is just a tiny part of who he is

Ceridwen describes Katja, who recently gained her green belt in karate and her Piano Grade 2, as an 'inspiration' for reminding her that Isaac's condition is just a tiny part of who he is

'Unfortunately so many of the images are old medical photos that really do not represent the person. 

'It is slowly changing and hopefully with these images we can make a difference.'

Ceridwen posts her photographs to an online gallery on her website Same But Different, an organisation she set up to raise awareness and counteract prejudice.

She also includes each child's background alongside their portraits.

'We include the story of that person so people really do get to know about them. It is a very important part of the project,' she explained. 

Three-year-old twins Isobel and Abigail were photographed for Ceridwen's project as both have Down's syndrome. 

Young ballet dancer Elisabeth, six, was born  at 23 weeks and has hydrocephalus - water on the brain. She couldn't walk until she was almost two, but now she loves running and dance lessons

Young ballet dancer Elisabeth, six, was born at 23 weeks and has hydrocephalus - water on the brain. She couldn't walk until she was almost two, but now she loves running and dance lessons

While the condition itself isn't rare, the odds of having identical twins with Down's is around two million to one.

Elisabeth's parents say she's learning to focus and her concentration span is gradually increasing

Elisabeth's parents say she's learning to focus and her concentration span is gradually increasing

Their mother Jodi wanted them to be involved to show that Down's is not an illness, and that people with the condition and those around them are extremely proud of who they are.

'When we were told our beautiful little babies had Down’s syndrome they were several weeks old,' she said.

'The consultant asked us into a room and the first thing he said was that he was sorry. 

'It is those words that have stuck with us more than anything else.

'There’s a lot of negativity around the condition with the focus often being around what children with Down’s syndrome can’t do. 

'Isobel and Abigail are full of life and happiness. 

'Their characters are very different and it is a joy watching them together.

'They may have been slightly slower in achieving their milestones and their speech is limited, however, this in no way has held them back. 

'They are really good at signing and spend hours dancing along to singalong videos.'

Young ballet dancer Elisabeth, who also features in the project, was born as a twin at 23 weeks. Her sister Mara died 27 days later.  

She was also diagnosed with hydrocephalus – water on the brain – at three months and couldn't walk until she was nearly two years old. 

Now six, she loves running, climbing and doing crafts as well as her ballet lessons.

Concentration and following instructions can be a challenge for her, but her parents describe her as an 'inspiration' with a 'lust for life'. 

Matthew and his twin sister Elin were born at 26 weeks.

Soon after the birth, Matthew was diagnosed as being deaf but he can now hear thanks to a cochlear implant. 

Heidi has Ehlers-Danlos syndrome which causes her joints to partially and fully dislocate

Heidi has Ehlers-Danlos syndrome which causes her joints to partially and fully dislocate

Despite chronic pain she loves to go swimming, horse riding and cheerleading with her friends

Despite chronic pain she loves to go swimming, horse riding and cheerleading with her friends

He also has Crouzon syndrome, a genetic disorder which causes the skull bones to fuse, affecting the shape of his head and face.

Mathew is aware that his appearance is different but accepts the way he is. The young football fanatic dreams of one day playing for Real Madrid or Manchester United.

Another of Ceridwen's young models is Heidi. She suffers from Ehlers Danlos syndrome, which causes her joints to partially and fully dislocate. 

She also has low muscle tone which causes tiredness, severe chronic pain around her joints and makes her very unsteady on her feet. 

Despite the challenges she faces Heidi lives a full life and loves going to the cinema, eating out, dressing up as a Disney princess and having her make-up and nails done.  

Matthew is partially deaf and has Crouzon syndrome, which causes skull bones to fuse, affecting the shape of his head and face. The football fanatic wants to play for Real Madrid or Manchester United in the future

Matthew is partially deaf and has Crouzon syndrome, which causes skull bones to fuse, affecting the shape of his head and face. The football fanatic wants to play for Real Madrid or Manchester United in the future

April, three, has Hurler syndrome, which affects one in 100,000 people and causes problems with sight, hearing, joints and the heart. She loves splashing in puddles, playing in the park and showering her older brothers with affection

April, three, has Hurler syndrome, which affects one in 100,000 people and causes problems with sight, hearing, joints and the heart. She loves splashing in puddles, playing in the park and showering her older brothers with affection

And she doesn't let her chronic pain stop her enjoying swimming, horse riding and cheerleading with her friends.

Equally brave is three-year-old April who has Hurler syndrome, which affects one in 100,000 people. 

Those affected are missing an enzyme that breaks down sugar, causing it to build up in the body. 

As a result she suffers with problems with her sight, hearing, joints and heart. However, a bone marrow transplant has halted the progress of the disease. 

She doesn't let her condition hold her back and loves playing in the garden and the park, splashing in puddles and getting dirty in the mud. 

April also loves singing and stories and smothering her two older brothers with affection.  

Ceridwen's son Isaac with his brother Theo, 11. Isaac has learned to speak in the last 18 months and can now tell his mother he loves her - words she never thought she'd here

Ceridwen's son Isaac with his brother Theo, 11. Isaac has learned to speak in the last 18 months and can now tell his mother he loves her - words she never thought she'd here

Meanwhile, Ceridwen's son Issac is also living life to the full.

'He is such a determined little boy,' Ceridwen said. 'He ran his first 3K race last month to help raise funds for Same But Different.

'He is undergoing extensive speech therapy and if you had asked me 18 months ago if I would ever hear my son speak, I would have had to say I doubted it. 

'He has worked so hard that he can now speak in sentences. And I cannot tell you the joy I have when I hear him tell me he loves me. They were words I never thought he would be able to say. 

'He still has a lot of work to do and his speech is still not clear but we can chat about things and he can tell me what he wants. 

'He is amazing because he has such a good sense of humour and despite everything he has never complained.' 

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