Remembering Rayaan Fund is a Special Named Fund at CCLG raising money for research into Langerhans Cell Histiocytosis (LCH).
Rayaan was one years old when he was diagnosed with Langerhans Cell Histiocytosis (LCH). His mum, Shradha, shares his story…
We were living a dream life together in Perth, Western Australia having moved from the UK.
On 18th January 2014 we welcomed our first child, a perfect baby boy named Rayaan Brown. He brought so much joy into our lives. As new parents we delighted over every ‘first’ and every milestone Rayaan reached. He was a chubby, happy and playful little boy with the most calm and gentle nature. Before we knew it, Rayaan’s 1st birthday approached and we celebrated with all of his friends. Everything was perfect.
After Rayaan’s first birthday he had a slight cold and seemed a bit more tired.. there were no other signs that anything was wrong. We had visited the doctor the week before he was unwell who suggested antibiotics for an ear infection.
On January 31st unexpectedly Rayaan became very unwell. He woke up very lethargic and wouldn’t eat or drink so we took him to the walk in clinic. Whilst in the waiting room to see the GP, he was in our arms and suddenly lost consciousness. There are no words to explain how much shock we experienced watching our little boy stop breathing. Emergency paramedics arrived at the scene and rushed him to the local hospital where he remained unconscious.
They did not know what was wrong.
We got transferred quickly to the ICU in Perth city at Princess Margaret Hospital where further tests and biopsies were carried out over the week. No one really understood what had happened but a chest xray revealed severe cystic damage to both Rayaan’s lungs. After a week of further scans and tests, they diagnosed Rayaan with Langerhans Cell Histiocytosis - primarily in his lungs and mildly on his skin. The consultants had never seen anything like this before on a child aged 1, so treating this condition was a challenge. They told us it was a ‘rare presentation of a rare disease’
Immediately Rayaan was put onto chemotherapy and steroids as surgery was not an option. He endured 6 weeks of intensive chemotherapy and had to remain in the ICU. He regained consciousness for a brief period but the damage to his lungs was so severe that he was unable to breath on his own and soon relied on the ventilator to help him. After 3 weeks the treatment was not working, and further x-rays revealed that the cysts were not improving.
Just six weeks later, on March 15th we held our baby boy in our arms for the last time as he took his last breath.
Rayaan was such a wonderful, calm and happy baby boy. He had beautiful big brown eyes and a smile that just filled your heart with so much joy. He was chubby and loved cuddles! He couldn’t yet walk but he loved crawling around exploring and loved playing with his toys and looking at books. He loved Elmo and enjoyed music and just started dancing to his favourite songs. We enjoyed endless time outside in the parks and going to see the ducks at the pond. He loved seeing the world around him and we would walk for hours by the beach.
The sadness and heartbreak of losing our son so suddenly is something we have to carry with us each day. As time has continued to move forward without Rayaan, we realised that we did not want to be bitter or depressed, but wanted to focus on achieving something significant from Rayaan’s wonderful life. We want Rayaan’s legacy to live on and for him to always be remembered.
We know family and friends don’t know what to say to help, but fundraising for a fund in Rayaan’s name means everyone can achieve something special because of their connection to Rayaan.
We can all help to keep his memory alive through this named fund, whilst helping to fund much needed research into Langerhans Cell Histiocytosis to one day give us some answers. A Special Named Fund means people will remember our son’s name and remember his wonderful life.
I want to focus on helping to fund research into Langerhans Cell Histiocytosis specifically as it is such a rare condition, and CCLG help to achieve this in such a special way by having a named fund. It means I can continuously raise money and get other family and friends involved too.
We would like to raise money through local fundraisers, regular donations and marathons in the future and get as many people involved in this whilst remembering Rayaan.
Make a donation to Remembering Rayaan Fund
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Open an online fundraising page for Remembering Rayaan Fund
Set up a regular Direct Debit donation to Remembering Rayaan Fund
Research projects funded
Fundraising pages
Text CCLGRAYAAN to 70085 to donate £5.
CCLG will receive 100% of your donation. You may also be charged for one text message at your network’s standard or charity rate.
You can make a donation or pay in funds raised by cheque, payable to CCLG, to CCLG, Century House, 24 De Montfort Street, Leicester LE1 7GB. Please ensure you make it clear that the donation is for Remembering Rayaan Fund so that your donation is allocated to the correct fund.