15 Feb 2023
The cub without a mane: how Raysa and S’aad are seeing the light through their leukaemia journey
Raysa Farah came across the work of Leukaemia UK when she was searching for information to help her cope with her son’s diagnosis.
S’aad was diagnosed with acute lymphoblastic leukaemia (ALL) at the age of just two years old in May 2022.
“S’aad had started limping and sleeping a lot,” said 31 year old Raysa who runs two successful floristry businesses and lives in Blackburn, Lancashire. “He became lethargic and complained of leg pain. I took him to A&E who sent me home with a diagnosis of ‘toxic synovitus’ – a non-specific hip pain that children get. I was told to treat it with paracetamol. But his limping and pain become progressively unbearable for him so our next visit to hospital was with firm instructions given by myself that further tests were to be made. After 48 hours of tests, and then a blood transfusion as he was found to have low haemoglobin, he was given a diagnosis of leukaemia.
“I felt confused as to how my son of good health in general and full of light could have cancer. There was so many questions that I had for the health professionals. The most important one was ‘would S’aad survive this’”
S’aad was sent immediately to the specialist Manchester Children’s Hospital. He stayed for six weeks for close monitoring and treatments including chemotherapy, a lumber puncture and steroids. Raysa and S’aad continue to visit the hospital every week for treatments and he is given a daily chemotherapy drug (mercaptapurine) at home.
Raysa has written a book which she hopes will help other children who are going through leukaemia, called The cub without a mane. The book, which is available on Amazon, is the story of a little lion cub who loses his wild curly mane and his confident roar during treatment for leukaemia, but manages to remain strong and brave. Raysa got the idea to write the story when she found herself trying to explain what was happening to S’aad’s four year old brother Adam. She hopes it will empower young children going through gruelling chemotherapy.
Raysa also wants to talk about her experience to help other parents going through the same trauma.
“The comfort I received from hearing other positive stories made me want to do the same for others. I’d also advise parents to be persistent. You know your child and if you believe something isn’t right get your child seen to by a professional and ask for a second opinion if you aren’t comfortable with the initial diagnosis or information given.
“We appreciate life now more than ever. Being a workaholic and running my own successful florists LKVERDANT and FLOWERFIX I have had to reduce my hours which for me has been challenging. My baby needs me now more than ever. Because of the amount of time we now spend together we have become extremely close.
“I have tried my absolute best to see the light and I hope my book can educate children, who like S’aad look different to his friends due to his illness, to know they are still so very special and still have a voice/roar in the world. Writing the book has been of great comfort and joy. Never did I believe I would be a published author but this journey has taken me by surprise is so many ways.”
Raysa is hoping that research by Leukaemia UK eventually leads to an alternative treatment other than steroids as she says the drugs made S’aad extremely upset, angry and frustrated.
“Surround yourself with positive people in this journey. Being diagnosed with cancer or being a parent to a child with cancer is a huge life change so go easy on yourself.
There is no right or wrong way to cope with the grief for the life you used to have so allow yourself time to accept the change whilst you find new routines and coping strategies.”
It’s hoped S’aad will soon return to nursery and be able to lead as much of a ‘normal’ childhood as possible, while continuing to receive ongoing treatment.
The book is now available to buy on Amazon.
Find out more about the signs and symptoms of leukaemia.
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