Angana with her family
Peter as a young adult with his siblings
“My younger son was born with a very challenging mood disorder. It was present from the day he arrived, but only became clear to us as a mental health issue when he was 3 or 4. By the time he was 5 he was cycling rapidly between rapture and agitation. It wasn't until he was 8 that we finally found a medication that helped him. But living with him was never easy; even with medication, his moods were labile and his composure extremely brittle. Once he was able to be tested, we learned that he was developmentally disabled as well. With the very best of services, he learned to read and write at the 2nd/3rd grade level, to follow a recipe, to ride the public bus on his own, and much more. In time, he was able to earn a high school diploma.
Our son had some chronic health problems during first few years, but he seemed to outgrow them by the time he was 5. Then, when he was 16, we took him to be evaluated for failed puberty. His voice never deepened, he never grew facial or body hair, and he never achieved adult height. Many tests were done, and we learned that he produced no testosterone whatsoever. More importantly, all of his blood counts were extremely low, and he was deemed to be in bone marrow failure. Eventually, we learned that he had an extremely rare genetic condition that starts with bone marrow failure and leads to an early death because there is no treatment for the underlying defect. We also learned from sequencing of his DNA that he was the product of father-daughter incest, leading to several harmful mutations, including both his fatal disorder and his profound mood disorder, plus three others that have never been seen before. Our son could not have a bone marrow transplant, because there are few matches for non-white people on the American registries, and there is no marrow registry in India. He really had no hope for a match. But his blood counts stabilized and remained low but not life-threatening for the next 6 1/2 years.
We knew he couldn't survive for too many years, but the only way to cope was to live as if his life expectancy was indefinite. He developed severe diabetes and needed 5 needles a day, but he learned to give his own insulin so that he could be independent. He received vocational training and started working part-time in a real job.
Although I've focused on the challenges here, my son was a truly extraordinary human being who touched people's hearts in a special way. When he was not in one of his difficult moments, he was "love on two legs". He had hugs and high-fives for everyone. He participated in every activity at high school, from singing in the chorus to being on the stage crew for several plays, to managing the girls' volleyball team, to attending the prom "stag" three years in a row. He was even elected runner-up Homecoming King one year. He refused to see himself as a "handicapped" person and the people around him responded by treating him as the "normal guy" he wanted to be.
Eventually, he developed a smouldering blood cancer, and his lungs became fibrotic. But still he went on, living his dream of being a "normal" guy. We expected his body would gradually fail and that he would be an invalid for months or years before he passed away. But his destiny was to fail suddenly, and to pass away in just two weeks from pulmonary fibrosis and total loss of bone marrow function. As his mother, my job was to walk beside him to the very end, making sure that he never felt fear or pain. He loved his life and very much didn't want to die. I had to help him die peacefully by making the right choices for him along the way. He was almost 23 when he died about 18 months ago.”
Peter Ramesh came to the United States in April 1995 at 6 months and he passed away at the age of 23 from blood cancer. His family have just returned from India after immersing his ashes in River Ganges. His mother, Christine, wrote his story in his memory. You may read her story as an Adoptive Parent, here.
May Peter rest in peace.