He was immediately rushed to PMH where he has remained in the paediatric intensive care unit (PICU) for the last 42 days.
What they initially suspected to be a case of pneumonia developed into something much more serious. Within the first two days, both of Rayaans lungs collapsed. An abnormal chest X-ray and CT scan revealed a severe cystic lung condition throughout both his lungs which has destroyed most of his lung tissue. There was no diagnosis for a week as none of the doctors had ever seen this in a baby. After many tests Rayaan was eventually diagnosed with multisystem Langerhans Cell Histiocytosis (LCH). A condition with an unknown cause and that is extremely rare - there are only a handful of cases worldwide with this presentation of LCH.
Surgery cannot be done to repair his lungs due to the extent of lung damage and a lung transplant is not possible either. All hopes remain on strong chemotherapy drugs which will be required monthly for as long as is necessary.
He came off the ventilator for a few days and did well and even smiled despite all his suffering, but suddenly lost consciousness again two weeks ago.
Rayaan remains in critical condition in an induced coma.
Although Rayaan has unknowingly been suffering and in pain most of his life he has still gone along with a smile on his face.
He is a fighter and we want to help him keep fighting and help his beautiful parents fight with him.
Langerhans Cell Histiocytosis (LCH)
LCH is a disease in which the Langerhans cells (called histiocytes) are increased in number and invade various tissues of the body. Histiocytes are cells normally found throughout the body and are most often found in the spleen, lung, liver, bone marrow. They are part of the reticuloendothelial system, which filters germs to prevent infections. It is not known why LCH occurs, it is not contagious and there is no genetic link. There is very little literature on LCH and it's long term consequences are unknown.
For Rayaan the LCH is aggressively attacking his lungs and skin and possibly skull and liver. He had no symptoms prior going into respiratory arrest.
What Can We Do to Help
This campaign can provide much needed love and support to Rich, Shradha and Rayaan. By sharing Rayaan's story we can help him and others fight this rare condition.
Through this website we are going to try and raise some much needed funds to give Rich and Shradha the chance to best care for Rayaan and make life as comfortable and happy as possible. This means we can help them purchase specialist equipment to assist with mobility, sleeping, breathing and bathing. Medication and specialist treatments.
Rich and Shradha would also like to donate money for research for LCH as it is so poorly understood and hope to raise awareness worldwide.
Thank you for your generous donation, on behalf of all those that love and care for Rayaan, Shradha and Rich. We encourage to share his story, and encourage others to follow your lead in supporting the Browns through this difficult time. Our support can make it just a little bit easier on them all.
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