DIPG Monster

Few months earlier I accidentally stumbled onto a Facebook page “love for Anya “ I came to know that Anya, a little princess was affected by DIPG which is one of the worst brain tumor that strikes children of age group 4- 9.I was pretty devastated. As a mom who had just given birth,I felt a heart wrenching pain in my guts. I started reading all the updates given by Anya’s dad from the beginning of her diagnosis.I could do nothing but feel sorry for that beautiful girl. A little girl who loved life and was happy in her little pink world ,chasing butterflies and collecting cute erasers was now suffering to survive.What has the world done to her?It’s not fair. She was etched in my mind forever. Every day I would spend some time to check her page on how she is coping up. I even urged my husband to donate money for that pinkie pie. Being just introduced to parenthood I could not put myself in her moms shoes. Her dad had given up hope on almost everything including his faith in God. The physical and emotional torture her parents had to endure each and every day knowing that they could not do anything to ease her pain cannot be expressed in words.

I started reading about Diffuse intrinsic pontine glioma (DIPG) which is a highly aggressive tumor found at the base of the brain. For a long time, little was understood about diffuse intrinsic pontine gliomas because clinicians feared that DIPGs could not be safely biopsied. However, recent and ongoing research at Dana-Farber/Boston Children’s has led to an important discovery about certain genetic mutations that might be causing DIPG.

I was so shocked to learn that it had 0% survival rate. A country that spends billions of dollars on election campaign and space technology loses 300 children every year to DIPG and has done nothing to find a cure. Their excuse is a ruthless pile of crap. Less than 4% of national funding goes for the DIPG research whereas 96% is funded towards adult cancer. This is mere injustice. I agree that all lives matter but seriously what wrong did the little kids do to deserve this.The lovely buds who have just starting enjoying the beauty of life in the sweetest way possible are robbed off their happiness.

Anya passed away on feb 1st and I mourned internally as if I lost a family member. I could still remember the video of her dad holding her dressed in pink for the last time. Tears rolled down my cheeks.I was just beginning to know about her through social media and even I could not hold my tears.The little brave warrior who had no idea what was happening to her impaired vision,sudden weight gain due to steroids,not being able to walk, not even being able to hold her head was in complete despair. Suddenly her beautiful life was taken away from her. This happened so quickly. After diagnosis the doctors give around 1 — 9 month time period to take care of them and make memories as they will eventually die.What the heck is that? The sad truth is that they will not survive. I mean how cruel it is to know that the best thing that has happened to us is given a grace period.How hard it must be for their parents knowing that they could not do anything but just watch the little blessing suffer everyday and finally be taken away from them forever. I could feel the anger of her parents and their inability to do anything to help their baby.

Not only Anya , I came across so many beautiful kids losing their lives to DIPG. Zamora moon, Antonio, Katherine and so on. The determination of their parents trying to find a tiny ray of hope to help their children is so inspirational. Parents traveling from North America to London and Mexico just to keep the children for a few more weeks or days is heartbreaking. The parents of these children try to create awareness by posting the ill effects of DIPG online not for attention but to get noticed by the respective officials to increase funding towards the research and find a cure for this brain tumor. It also shows the agony they go through till the last breathing moment of their kids.

Today we live in a social media world where anyone can openly sow discord on the internet by sharing hurtful opinions, thoughts and arguments on everything. These distressed parents get trolled and questioned by few heartless people on posting pictures and videos of their kids suffering. Some even go to the extent of quoting that the expenses needed for this treatment is a scam without understanding the real struggle. Although some kind and generous people come forward to organize a bake sale, marathon, concerts and many other events to contribute for the treatment. I even came across few kids setting up lemonade stands to collect money and contribute towards the treatment

We really need to hope and work forward to fight against DIPG and stop the children from dying by finding a cure. We are not doctors. The only thing we can do is help one another and contribute for the research and to end this cruelty faced by these children. We can’t help everyone but everyone can help someone. Leo Tolstoy once quoted “The sole meaning of life is to serve humanity “ I have read this somewhere when I was a kid but only today I understand it’s true meaning. Love everyone irrespective of borders, caste, color,creed, religion and money. In the end everything is about love. We never know what the future holds for us.

May kindness and love prevail in the hearts and minds of humanity.

Lost in thought,

Jenifer.

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