There is no doubt that living with a rare disease is difficult, especially when growing up. Blending into day-to-day life prove challenging when there is a constant stream of assumptions about your capabilities as a human being. The referenced photo series shows the importance of looking beyond rare diseases.

Photographer, Ceridwen Hughes, is using her skills to counteract society’s judgments by telling the stories of children with rare diseases. She calls this series the “Rare Project”.

“The Rare Project will ultimately give you the opportunity to get to know the children behind the conditions.” – Ceridwen Hughes

Ceridwen has a son, Isaac, who was born with the condition, Moebius Syndrome. She understands the struggle that parents go through in order to get answers and treatment. Because the condition that Isaac has is rare, along with the conditions of those that she photographs, there are often few specialists around to assist.

Some of the conditions that are described include, but are not limited to:

  • Trisomy 13 / Patau Syndrome
  • Herpesviral Encephalitis
  • Dravet Syndrome
  • Phelan-McDermid Syndrome (PMS)

Looking Beyond Rare Diseases

If you are a family member or friend of someone affected by any sort of disease, it is of the utmost importance to support them. There will be days that try your patience and we all know that society can be unforgiving at times. With this in mind, we encourage you to have a positive mindset, to seek a valuable lesson in all situations, and to teach those around you that rare conditions can be a blessing.

To read the full stories of these children, follow the links below.



The Rare Project