“Ujaas means the first ray of sunlight that cuts through the darkness of dawn. Our bundle of joy, the cynosure of our world passed away, leaving us stranded in darkness and despair and with a life without a meaning. The only thing that made some sense was to do something that would keep his memories alive forever – something that would help other children survive the trauma of cancer.” - Shibaji Mandal
Ujaas was a cheerful and curious little boy who could make anybody smile – he had the ability to stand out in a crowd. Unfortunately, he was diagnosed with leukaemia in June 2011, when he was just 2.5 years old. He was in the process of getting better when his cancer relapsed, for which he needed an expensive bone marrow transplant. His father, Shibaji Mandal, a healthcare consultant, started a crowdfunding campaign on Facebook, which garnered more than 300 donors. Unfortunately, even before he could get the transplant, Ujaas succumbed to a deadly infection in June 2014.
“My world came crashing down. But I didn’t want to shed tears…my son deserved more than that. He deserved something positive. I chose to invest the rest of the unused money from his donation funds in The Ujaas Foundation." -Shibaji
You are never alone
The foundation aims to help people who cannot afford their child’s cancer (Acute Paediatric Leukaemia) treatment in the following ways:
• It provides counselling to caregivers/parents – Cancer takes a toll on both the patient and the people taking care of them. The Ujaas Foundation (UJF) will help manage your anxieties and address your fears. Call up the contact number given on the website and somebody from the foundation will respond back to address your queries.
• It helps with accessing reading materials with up-to-date information – UJF provides resources that will help you ask the right questions and find answers to them free of cost on their website.
• It helps families to mobilise emergency funding – Cancer treatment is expensive and most of the time, the diagnosis is so sudden and unexpected that arranging funds can be a monumental task for parents. UJF helps fund emergencies through its bridge fund in order to ensure continuity of medication or chemotherapy.
A complete guide on the ABCs of caring for Paediatric Leukaemias.
Additionally, Shibaji has also come up with a ‘complete guidebook’ on managing paediatric leukaemia . It is drawn from personal experiences as well as from intensive research on the subject matter after discussions with doctors and experts. Through this, he aims to make this difficult journey of fighting cancer a little more bearable. Right from giving clarity on what exactly the disease is to giving tips on how to fight helplessness and feelings of anxiety, this book is a must-read for anybody who is caring for a child with Acute Paediatric Leukaemia (ALL).
“You have to be very careful in dealing with Acute Paediatric Leukaemia. There’s no safety margin for errors. Even a small infection can be deadly , and infact, more children with Leukaemia die from infection and not from Leukaemia," Shibaji
Shibaji knew that his life would never be the same after Ujaas’ passing. But he took that grief and managed to convert it into smiles for over hundreds of parents treating their children from Acute Paediatric Leukaemias.