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Unfortunately, first week of April, 2022, my only daughter, Eshna Sarkar, aged 8.5 years was diagnosed with a rare Brain Tumor disease, Diffuse midline glioma, H3K27-M mutated WHO GRADE IV. Definitive radiotherapy with tomotherapy at Chennai already completed on 30th May 2022 and this is the last treatment available in India. This is a huge shock for me, and my family and I would like to try our best to support my daughter in any way possible. After consulting many doctors, I came to know of a promising clinical trial for these rare disease with a new drug called ONC201.
I have also gone through clinicaltrial.gov and it seems that related clinical trials are ongoing in the US in several hospitals (like Albany Medical Center, Neuro-Oncology Clinical Care, University of Iowa, National Cancer Institute, Washington University, University of Zurich, and UCSF Benioff Children’s Hospitals). I have started dialogue with all these centers in this regard. I have sent necessary clinical inputs from Apollo doctors as per their request. As per US clinical protocol trial suggested MRI & blood tests done on 20th June 2022 and shared all the reports with them. Post screening of these reports, Albany Medical Center, US, sent an urgent invitation letter confirming her (ESHNA SARKAR) enrollment in most promising clinical trial ONC201 and for this reason need to travel to the Albany, US to start the ONC201 trial.
However, in the MRI she has taken on 20th June, 2022 as per trial requirement, the tumor has grown quite a bit and is present exophytically. Our treating surgeon, Dr. Siddhartha Ghosh, wants to debulk the tumor, otherwise, he feels it won't be possible for Eshna to travel to the US. She already developed sixth cranial nerve palsy. She will be operated on 30th June 2022 in Chennai, Vanagram.
I am applying for a visa. Soon after the postoperative period, once we obtain the visa, I will travel to the US with Eshna. According to the protocol we need to stay in the US for a minimum of 6 months to complete the trial.
This is my humble request to you all to look into the matter and help us. To help us in getting an accommodation in or around Medical Centre or Hospital. To give some financial assistance to the tune of $70,000 for lab tests, treatment, transport, and food.
