Support Sourav's Fight Against Craniopharyngioma

Hello Everyone

My name is Sourav, father to a sweet 2-year toddler and a responsible husband. I came to US with my wife in 2015 as a postdoc and everything seemed to go so well. Things took an ugly turn around May 2020, when I complained of severe headaches and poor vision. Diagnosis revealed that I have been suffering from a rare disease called “craniopharyngioma”. This is a rare disease affecting 2 people in a million. It forms a tumor in the brain near the hypothalamus and optic nerves blocking critical hormone functions and primarily eyesight. The initial symptoms were severe headaches and gradual vision loss, that led to this diagnosis at the peak of Covid-19 era. My first surgery was done in Jefferson Hospital, Philadelphia and the road to recovery was long for 3 months, with diabetis insipidus, fatigue and psychological trauma. In the next couple of months I moved to Greenville, NC to take up a postdoctoral role at East Carolina University.

This trauma changed our lives forever, inflicting social, psychological and extensive financial drainage. Most of my savings were gone paying medical bills and trying to rebuild our life. We thought the nightmare was over for good and expected the birth of our girl child in Oct 2022. Our world came crashing down again in September 2022, when again I complained of vision loss and to our worst nightmare the tumor was back, one month before our baby girl was to be born. The plan of action now was to avoid surgery and treat me with radiation to arrest tumor growth. Radiation therapy combined with a prescription of steroids caused a whirlwind of mental and physical changes, and this was all when our baby was 2 months old. Despite good commercial medical insurance, our medical bills skyrocketed putting was through more financial stress.

At the end of 2023 in December, it was decided by my neurosurgeons in Duke University Hospitals that I needed another brain surgery to help restore my vision and symptoms.I had to undergo another brain surgery in Jan 2024. Now in the month of April a repeat MRI showed that the tumor and cyst are back and again causing vision loss. At this point I feel I am fighting an already lost battle with insurmountable odds, with piling financial debts and medical expenses. There is still some hope in the form of a combination of chemotherapeutic drug 1) Dabrafenib (a BRAFV600E inhibitor) and 2 ) trametinib (which is a MEK pathway inhibitor) that can arrest and reverse tumor growth , hopefully. The expected cost of these medications even after good commercial insurance is a substantial monthly expense. There are realistic possibilities of enrollment in clinical trials across US which would incur additional traveling and other expenses.

In this situation I require financial assistance as well as mental support from all my friends, colleagues, family and benevolent soul to help me and support me and family during this crisis. Donations and contributions of any magnitude would be of immense help. Send us your prayers and good wishes.

Thank you

Sourav Roy and family.