Namrata began the Khushil Pandya Fund after tragically losing her son to a rare form of brain cancer known as DIPG, or, Diffuse Intrinsic Pontine Glioma: her boy, Khushil, was only 14 years old at the time. Now, the resilient mother has dedicated her life to raising awareness about the frustratingly covert malign cancer. “There’s so much more we can do to not only monetise research into the illness but also detect the signs at an earlier stage. Many GPs have not come across DIPG and it can easily fall under the radar. I want to be able to circulate knowledge of the condition mostly so other sufferers and families can make the most of the time they’ve left with their loved ones.” As of yet, there is no known cure for the disease. “Neil Armstrong actually lost his daughter to DIPG,” Namrata added. “The cancer is uncommon but incredibly tragic.”
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Namrata elaborated on the initial signs of DIPG as her young child, Khushil, had experienced it. She poignantly described stroke-like symptoms which intensified into utter sensory deterioration: “Initially, he had a squint in his eye and eventually lost the elasticity completely around it. At the optician’s, they said that they could see something in the back of his head. It signalled danger. It caused a loss of balance then shortly Khushil’s swallowing became impaired. Then his hearing, tasting, seeing and every motor function was disrupted until there was loss of control of limbs and the whole of the body. He could not even autonomously breathe. We had to watch our child regress and disintegrate in front of us. The tumour sits right at the junction between the spinal chord and brain. As a result, it cannot be detected in a biopsy. You require an MRI scan to effectively identify it. It is not hereditary. It’s a very nasty condition that renders everybody involved powerless.” However, despite the all-consuming viciousness of the cancer, Namrata fights to focus on the positive, stating that Khushil, who was a vibrant and active spirit, would have wanted it this way. “Khushil did not allow the physical symptoms to detract from his bubbly personality – he still attended school using crutches and then a wheelchair. He would write down communications using an I-Pad when he could no longer speak. He worked so hard up until the end. He was even awarded Student of the Year! He would not let obstacles defeat him and lived life on his own terms. Similarly, I will not accept that this cancer has to be terminal. I was horrified when we were told of Khushil’s plight and no hope for recovery all in the same breath. Radio therapy was offered but only by way of slowing down the illness. Khushil lived relatively long despite the diagnosis, but no one should have to feel so overwhelmingly doomed.”
Honouring the inspiring perseverance of her son then, Namrata beautifully transmutes otherwise intense negativity into enlightenment, strength and joy. One person’s emotional fortitude blazes the way for breaking through social barriers. “You do not know how powerful you are until you are pushed,” Namrata stated, and indeed, we don’t know what innovation is around the corner unless we try! The Khushil Pandya fund has been created to pay tribute to an incredible luminous life while assisting others in successfully managing the adversity of the illness and hopefully producing enhanced treatments as well as, possibly, the ultimate heartening cure. “We also use the funds to drive research into every form of brain tumour which is the biggest killer of people Under 40,” Namrata shared. Furthermore, the passionate pioneer is in the process of creating a documentary and authored the book, Perception: Experiencing the Wonders of Life, to constructively guide those who are currently facing the illness through how best to spend the remaining invaluable time:
“You want to celebrate your time together, creating wonderful memories: go abroad, do fun activities and help those diagnosed live fully as they deserve. Give them quality and longevity. Khushil was a dreamchild who wanted to help preserve endangered species – this way we can somewhat honour his wish by helping lift people who are faced with such abrupt death. During his last years, we travelled to Scotland, Italy and Alaska!” Here, Namrata emphasised the heightening power of community in battling gritty individual strife together with personal courage. “Friends and family rallying around you are integral in weathering dark times. We have received so much support from others which has made this bearable and that little bit better.” Indeed, Namrata’s far-reverberating fund has elevated respectful commemoration of Khushil to benevolently immortalising him. “We still celebrate his birthday every year,” Namrata, who now also has a daughter, gushed. “This time, we went on a walk to London Zoo! Khushil means happiness and so he really is all around us.” Finally, life transcends and is infinitely bigger. No matter how dire the challenge, it seems to intuitively pave another invigorated way. Khushil’s story has been rightly covered by The Metro and The Mail. To get involved, please visit:
