Ray of Sunshine
Rayaan was born in Perth, Western Australia on January 18th, 2014. He was a perfect and healthy baby boy, but, just two weeks after his 1st birthday on January 31st, Rayaan suddenly stopped breathing.
He was immediately rushed to the hospital and what they initially suspected to be a case of pneumonia developed into something much more serious. A CT Scan revealed extensive cystic lung damage throughout both his lungs. Within two days, both of Rayaan’s lungs collapsed.
Rayaan remained critical and on ventilator support and after multiple tests a diagnosis of Multisystem Langerhans Cell Histiocytosis was made. It was mainly in his lungs plus on his skin, and there was also suspected liver and mastoid involvement. Rayaan had unknowingly been suffering from this cruel disease but never had any symptoms.
We read all the available journals and reached out to many consultants in the U.K., Australia, and America for advice. We faced a lonely and uncertain journey because Histiocytosis is so rare. Rayaan's case was described as a "rare presentation of a rare disease".
Dr. Ken McClain of Texas Children’s Hospital was contacted for treatment advice and he provided much hope to the consultants and us during a time of utter despair and helplessness.
Rayaan spent 6 weeks in the pediatric intensive care unit. He endured multiple chest drain procedures, chemotherapy, and steroids, yet, he remained strong and courageous. He even smiled in spite of his suffering.
He fought a tremendous battle to stay with us, but sadly, on March 15th, 2015, Rayaan passed away peacefully in his mummyand daddy's arms.
To lose our baby boy suddenly to a rare disease without having any answers about what caused it or how to treat it has been devastating. So, we want to find those answers to help others still fighting against Histiocytosis. We have started ‘A Ray of Sunshine’ campaign in honor of Rayaan to spread awareness and fundraise for Histiocytosis research. We have already had a lot of success with fundraising events in the U.K. and Australia and shall continue to do this to support The Histio CURE Foundation.
Together we can make a difference and find a cure for Histiocytosis.