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The Story of Rayaan

 

Heroism is not constrained by age or size. Rayaan, sometimes known as Little Buddha for his chubby appearance and calm nature, was a happy, healthy baby boy until he stopped breathing two weeks after his first birthday. He had no history of serious illness, there was no warning. It was terrifying for his parents to watch the emergency treatment needed to revive him before he was rushed to Princess Margaret hospital. He endured setbacks and numerous tests before he was finally diagnosed with multisystem Langerhans Cell Histiocytosis (LCH).

LCH is a rare cancer-like disease which affects white blood cells called histiocytes. An abnormal accumulation of these cells can occur in skin, bones and organs, causing damage to healthy tissue. There is no known cause for LCH, it is not inherited nor contagious. The incidence is approximately five per million in infants. Until his collapse, there was no indication that there was anything wrong with Rayaan – he looked a picture of health.

Over the next six weeks Rayaan and his family remained in the Intensive Care Unit at PMH. Rayaan was too unstable to be moved to the oncology ward. Rayaan underwent emergency surgeries to help his breathing and endured chemotherapy with the accompanying side effects. At times he was placed on a ventilator, which meant that his family could not hold or comfort him. Through it all, Rayaan’s superpower, his calm and gentle nature, was present. He did not get angry despite the procedures, medical equipment and confinement to bed. He showed amazing strength, bouncing back several times when critically ill. Against the odds, he adapted to the severe damage to both his lungs, enabling him to survive with no sign of begin so unwell.

His ability to cope and still carry on with a smile and with so much joy and love was just incredible and he gave us the most wonderful memories to hold onto.

Those memories are of a chubby little boy with big brown eyes, fluffy hair and a beautiful smile who loved cuddles with his mummy and daddy. He enjoyed being out in the sunshine in the park, going to see the ducks at the pond, picking grass and just looking at the world. He loved the trike that was his first birthday present, bubbles, cats and dogs, and his favourite Mickey Mouse comforter. He was a ray of sunshine.

His calm nature and love for us and the world around him are things I hold very dearly in my heart.

Sadly, Rayaan did not return home from PMH, passing away peacefully in his parents’ arms at just thirteen months of age. His legacy lives on in the inspiration he has provided to his parents to make a difference in other people’s lives, and especially in the lives of other children suffering from histiocytosis and cancer.

Research to combat rare diseases such as LCH is urgently needed, but little funding is provided by government. Rayaan’s family have set out to raise awareness and funds to contribute to research in the search for a cure – their Ray of Sunshine project. Raising awareness is important because LCH may go undiagnosed, or be misdiagnosed because symptoms may mimic other common conditions.

He has taught us to live fully for him and all our choices in life now focus more on sharing and giving back to others as well as being grateful for time we have with family and with his siblings.

Rayaan will live always in his family’s hearts and memories. He has a younger brother, Kian, who did not meet him, but who will hear about his brave big brother and the life he shared with their parents.

I encourage all parents to value the present moment with their child because you just don’t realise how life can be turned upside down.

You can purchase prints of Rayaan’s artwork here.

 

Author
| Cori Williams 

Artwork by
| Dylan Nietrzeba | Dylan Nietrzeba Art
www.facebook.com/dylannietrzebaart/ | @dylannietrzebaart |

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