A Message From Team Neev
When we have each other, we have everything! For us, "everything" is a small, beautiful family of Sandeep and Misha and their two boys, 8-year-old Rayaan and 5-year-old Neev. Little did anyone know that the peace and happiness of this small nest residing in Pleasanton, CA would be challenged when Neev was diagnosed with DIPG (an aggressive form of brain cancer) on August 15th, 2020.
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DIPG is an extremely rare brain tumor at the brain stem; it affects just 200 kids annually in the USA (1 in 100,000 kids). Because it's so rare, there is no funding available for research and thereby, only experimental treatment options. The tumor is jelly-like, making it impossible to remove it surgically. After the diagnosis, Neev has been through radiation as well as three brain surgeries involving an experimental trial out of New York. Unfortunately, the trial had an extremely adverse reaction on him. He went from being a boy with a cute smile who was able to walk, talk, and eat, to being completely bedridden - being able to only move his eyes - in a matter of 24 hours. What followed was intensely scary weeks in ICU, an extremely challenging flight back to California, and a months-long hospital stay in UCSF. After about 3 months, he came home with a severe loss of functions. To give you a sense of the situation, he is now a five-year-old boy trapped in a six-month-old body. Since then Neev has worked really hard to regain some of his functions, proving his doctors wrong. He is still on a feeding tube, cannot walk unassisted, and can speak very little. He has a very long way to go just to get back to where he was in November 2020. And that's without addressing the tumor.
Before the diagnosis, Neev was like any other five-year-old - full of energy, constantly chattering, always on his scooter, asking questions about everything he came across. He loves nature, animals, birds, and even those tiny Rollie Pollies. He named the birds in the backyard - he calls his hummingbird ‘Cutie Pie Grapes’. He is a neat freak, meticulous about everything he does - cleaning and organizing his books, toys, clothes, even the soap and shampoo bottles in the bathroom - from the tallest to the shortest. He loves Pokémon, Legos, Avengers (Thor being his favorite), Arts and Craft, and his cars. His favorite colors are blue and gold. He loves growing veggies in his garden with his dad. His favorites are zucchini, cucumbers, corn, and especially tomatoes. Whenever he came home from anywhere, he would just venture into the backyard, plucking a handful of tomatoes, washing them, and eating them with a big grin on his face.
Now, of course, he is not able to do any of this.
It took multiple months to convince Sandeep and Misha to agree to accept donations. Having founded a nonprofit (http://www.beyondintent.org/ ) that funds the education of underprivileged/orphan kids in India as well as handicapped ones to build their careers and leading key donation drives for varied needs, both Sandeep and Misha have waited until the very last possible moment to consider asking for help.
If they both have jobs with good insurance coverage, why would they need to raise funds? Right after the diagnosis Misha stopped working to focus on Neev. She exhausted all her vacation and has been on unpaid leave of absence. As Neev’s health deteriorated after the trial, the stress became so extreme that it started taking a toll on the family's emotions, mental and physical health, and life savings. The trip to New York for surgery, hundreds of therapy sessions, natural medicines, herbal supplements, and nutrition have cost close to $50,000. Add many thousands of dollars for the out-of-network costs of the actual medical expenses coming from lengthy hospital stays, MRIs, blood tests, x-rays($30,000 and increasing). The family is also exploring advanced cutting-edge techniques, funding research of experimental medicines for thousands of dollars($100,000). Neev is on an experimental medication from Germany that is expected to cost $30,000 annually. Last but not the least, there is one breakthrough promising trial for DIPG in Australia that's been a success in mice and the human trial will be starting soon. The family hopes to have Neev for that trial as their best bet which will cost them $500,000 out of pocket. All in all, the family will end up spending upwards of a million dollars in their hopes to cure Neev.
We(Team Neev) took a moment to close our eyes and think about Neev as our own and our hearts ached. It is now THAT TIME for all of us to come together and offer hope through help and prayers to this family. Neev needs to get back to his spunky cute self on his scooter to restore his family’s smiles and most importantly to nurture his little garden of veggies waiting for him to come back and to read his favorite books, just like any other 5-year-old deserves to.
Neev will grow up knowing the goodness in others just like his parents, and we all will forever be grateful.
Team Neev requests everyone to please not contact Sandeep or Misha directly. We are here to answer all your questions and will be posting timely updates. Each second of theirs is very precious and we want it to be used completely for family.
Even if you cannot donate, please take a second to send your love and prayers and to share this message with others. Remember…. every little bit helps and you all can be a part of Team Neev!