The RARE Spoonful: Why I Could Smile at My Sister’s Funeral

April 4, 2016

by Ashanthi De Silva

There are three children in our family— three sisters, each one year apart and each with a different rare condition and complication. Dilani was the youngest. My mother told me when she was born she felt like a healthy baby. After all, who could know better — my mother had been a nurse for fifteen years prior to her pregnancies. However, if I ask my father, he’ll say the moment he held her, her body felt stiff in his arms, and he knew she would not be well.

unnamed-57The pregnancy was not an easy one. Those nine months left my mother nauseous and weak with sciatic pain. When my mother found out she was pregnant, she chose to consult a genetic counselor since her other two daughters were both severely ill. The test results: there was a 95% chance the fetus would be born with severe brain damage. However, her doctor convinced her she should hang on to that “five percent” and continue with the pregnancy. His reasoning? “You Asians abort all female fetuses anyway,” he said. My parents were astounded— they already had two daughters, how could a medical professional make such a horrid, slanderous statement? They carried the pain of these comments and chose to continue with the pregnancy.

Dilani was born in November of 1987, and would turn blue, often convulsing and having seizures. She never spoke a word. Her little feet never touched the ground. She wasn’t expected to live past two years of age. To the parents who have or will hear these predictions, I ask you to fiercely hold on to love and hope and refuse to let go. Dilani spent 25 years with our family. Most of my time with her was spent trying to squeeze in her bed and scream in her ear until she cried. Anoushka, the dutiful, older sister, spent her time yelling for my mom so Dilani could be free from my terror– the bliss of sisterhood. I remember her brown, wandering eyes would dart about the room when she heard my parents’ voices and her loud gasps and squeals of laughter literally filled our house.

Until one day, it didn’t.

Her laughter ceased at about fifteen years of age, as did her crying. None of us could determine anymore when she was uncomfortable or in pain. Her limbs became rigid. The little fat on her body began to disappear. The frequency and length of grand mal seizures increased. Anoushka was usually in Dilani’s room, keeping watch from her wheelchair while my mom was busy with housework. “MOM, ASHANTHI, come quick! She’s having a GRANDMA seizure!” Hah, neither my sister nor I could ever pronounce that word correctly growing up. She was hospitalized multiple times with periods of nonstop seizures, lasting 24-28 hours. I cringe as I remember once receiving a phone call from my father, barely able to speak as tears swallowed his words. “Dilani…..her skin is raw, ants came and ate through the skin on her ears…and on her body.” Saliva had drooled from her mouth down her face and shoulders with small pieces of food at night, and they had come. Her loss of brain function left her incapable of making a single sound in her defense. Words will never be able to express the deep rooted, stinging pain of watching your loved one, once full of smiles and giddiness and LIFE, slowly slip away.

When Dilani struggled for her last breath, I thanked God and the universe her soul had been released from the cage of her withered body, unable to contain her spirit any longer. When we went to kiss her forehead before the casket was closed, I whispered, “I know you’re not here. This is not you anymore.”

The priest stood at her feet, proclaiming, “Dilani is free from this horrid Earth and her suffering is no longer.” As he uttered those last words, a group of boisterous birds outside our home began flying about and chirping so loudly they drowned out the priest. We all turned our heads to the window, and I knew I was right. I smiled through every hymn, through every reading. How couldn’t I? She was finally free.


About Ashanthi De Silva

Ashanthi De Silva is a rare disease blogger and patient advocate living with SCID-ADA. Originally from Ohio, she graduated from Ohio State University with an undergraduate degree in international relations and a Masters in Public Administration. She lives with her husband and Shih-tzu mix fur ball, Maya, in Logan Square, Chicago, and enjoys traveling every year to see family in Sri Lanka. She is involved with raising awareness for primary immune deficiencies through the Immune Deficiency Foundation. Her new blog, Life with PI ( focuses on story sharing of her personal experiences, as well as other patients and caregivers

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