A BALDIVIS woman who lost her baby to Histiocytosis has set up a Ray of Sunshine campaign to raise awareness of the condition.
Shradha Brown is also fundraising in memory of her son Rayaan for research into the rare condition.
“We hope that by sharing Rayaan’s story it will inspire others to help us make a difference,” she said.
Mrs Brown said Rayaan was born a happy and healthy boy in 2014.
“He was close to walking and just started dancing,” she said.
“But two weeks after his first birthday our perfect little boy suddenly stopped breathing in our arms.
“There was no warning.
“CT scans revealed that both his lungs were completely cystic; something that even the consultants never expected to see in such a healthy looking boy.
“We were told he had a rare presentation of a rare disease.”
Mrs Brown said Rayaan remained critical on ventilator support and the consultants had no diagnosis.
“Within two days, both of Rayaan’s lungs collapsed and surgery was required to help him,” she said.
“We could only sit by his side helpless and wait for results of multiple tests.
“After almost a week with no answers, a diagnosis was finally made of multisystem Langerhans Cell Histiocytosis (LCH).”
Mrs Brown said Histiocytosis was a rare cancer-like condition of white blood cells called histiocytes.
“These cells normally fight infection as part of our immune system, but in LCH they cause damage to healthy tissue and organs instead.
“In Rayaan’s case his skin, lungs and possibly skull (mastoid) and liver were involved.
“This diagnosis meant immediate treatment with steroids and chemotherapy.
“Multiple surgical procedures and chest drains were required as the weeks followed and we watched our perfect little boy fight for his life.”
Rayaan spent six weeks in the paediatric intensive care unit.
In March last year, he passed away peacefully in his parent’s arms.
“He is our hero and our inspiration forever,” Mrs Brown said.
“He fought so hard to stay with us and so we will continue to fight against this cruel disease that took away our innocent baby boy and one day hope to find a cure.”
Mrs Brown said more research was needed to help find a cure for Histiocytosis.
Visit www.facebook.com/histiohero or http://www.histiouk.org/ray-of-sunshine/