We have set up the ‘Ray of sunshine’ campaign in memory of our special baby boy called Rayaan Brown. Our campaign wish is to spread awareness and fundraise for research into the rare condition Histiocytosis. We hope that by sharing Rayaan’s story it will inspire you to help us make a difference.
Rayaan - our little ‘Ray’ of sunshine
Born on January 18th 2014, Rayaan was a smiley, happy little boy. He was strong and healthy reaching all his milestones. He was close to walking and just started dancing! But two weeks after his 1st birthday our perfect little boy suddenly stopped breathing in our arms. There was no warning. He was immediately rushed to the hospital and what they initially suspected to be a case of pneumonia developed into something much more serious. 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’.
Rayaan remained critical on ventilator support and the consultants had no diagnosis for us. Within two days, both of Rayaan’s lungs collapsed and surgery was required to help him. 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). This is 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 6 weeks in the paediatric intensive care unit and he fought for his life with incredible strength, courage and bravery.
But we never got to bring our son home. On March 15th 2015 Rayaan passed away peacefully in our arms.
He is our hero and our inspiration forever. 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.
How can you help us?
Read and share our page – understand the disease LCH and help us spread the awareness about this condition.
There is no known cause for LCH; it is not inherited nor contagious. LCH can affect both children and adults. Most commonly children aged between 1-3 years are affected. The incidence is approximately 1:200,000 in children and even rarer in infants under 2year old 1-2/million.
You can also help to fundraise – join us at our “ray of sunshine’ events or set up your own fundraiser to support us. We welcome all ideas and events!
Why is awareness and fundraising so important?
Although termed a ‘rare disease’, LCH is very often under diagnosed or misdiagnosed by GPs. This is because some symptoms and lesions may resolve spontaneously or be mistaken for other common conditions. For example, in our experience and from speaking to other histio families skin lesions can appear first and mimic eczema, cradle cap, nappy rashes. Also persistent ear infections is a common sign of skull LCH. Depending on which site is affected will cause different symptoms. Is these warning signs are caught early - then treatment is more effective. We need GP’s to be aware of signs to look out for to aid early diagnosis. It may not actually be as ‘rare’ as we think.
We need answers!
More research into histiocytosis is essential to understand it better. This will then help us to find a cure. Unfortunately, research costs money and being a rare disease means that the government will not fund research for it. So it's upto us to fundraise to help make a difference.
Thank you for supporting our campaign.