Our beautiful daughter, Maia Lily Douglas, was born at Barnet Hospital, London July 4, 2013 with two porcelain white lesions on her forearm and thigh. Nobody at the hospital knew what it could be, we were told she was healthy, and then sent home with an appointment to see a dermatologist.

The lesions began to turn into what looked like cigarette burns shortly, and our journey from one dermatologist to another began as we tried to find out what they were.

On July 14, 2013, when Maia was 10 days old, she began to vomit bright-green fluid, and was immediately rushed to Great Ormond Street Hospital (GOSH). She was diagnosed with sepsis and responded well to antibiotics. A few days later, we were sent home and referred to more dermatologists.

Later, we were asked to come back to GOSH for the doctors to biopsy one of the lesions. At this stage, the lesions were appearing all over her body and we had even noticed lesions inside her mouth. 

She was 7 weeks old the day one of her eyes stopped moving and we returned to GOSH for the biopsy. By chance, we got a doctor that happened to have heard of Degos disease, possibly, because baby Rio Carroll in Birmingham who is mentioned in another patient story. Maia was immediately admitted to the hospital and we went from one department to the next whilst she underwent test after test. 

On April 12, 2019, Maia was diagnosed as the first and last patient to be treated at GOSH with systemic Degos disease. On September 7, 2013, Maia sadly passed away at only 9 weeks old.

I’m genuinely sorry to have not shared her story until now. I have tried many times.

I was contacted by Dr. Veronica Kinsler at GOSH, because a genetic link might have been discovered, and researchers need samples from our two other children. 

Our son was born in 2010 and is now 9 years old, and we had another daughter in November 2014, and both are healthy.

At this stage, the genetic link is unconfirmed; however the doctors at GOSH are working incredibly hard to identify possible genetic links that may one day prove important in diagnosing Degos disease.

We feel incredibly blessed to be Maia’s parents and hope that her short life will prove to have lasting significance.

Richard Douglas