In Memory

Nicholas Carey Allen

Nick was born March 31, 1981 to Sandy and Wendy Allen in Mankato, MN. Nick was born at 42 weeks gestation, weighing 5lb, 14 ounces. When he was 3 months old, the head of the University of MN Dental School looked at him, and told us he had Coffin Siris Syndrome. This dentist had written a book on rare syndromes. He looked at Nick’s beautiful little hands and noticed the hypoplastic nail on the little finger, and the missing terminal phalynx on his little fingers and toes.

His life wasn’t easy. Any illness put him in the hospital. He struggled to eat and struggled to thrive. We were fortunate to speak to Dr. Coffin many times. Dr. Coffin was the first person who actually knew the problems we were encountering and could reassure us.

Nick was always happy, always smiling and was truly gifted from God. All the illnesses and all the medical procedures he went through; he handled them all with grace, and never cried. He loved his family and friends unconditionally, and in return we became his warrior advocates. He was never alone and knew we were there to fight for him. It wasn’t till he developed schwannomatosis that severed his spinal column , that we learned he had SMARCB1. The next 8 years fighting those schwannomas was tough for all of us. We hoped and prayed that his life was not in vain, that he touched and taught and educated people- doctors, nurses and researchers – about his life and the care that needed to be tailored to our special children. Nick’s little body was too tired to fight anymore and he passed away on Oct 24, 2015. He was surrounded by his parents and two brothers, Nathan and Ben and about 20 of his special caregivers. He lived 34 gloriously happy years and enriched all of our lives beyond measure!

Dr. Grange Coffin

Dr. Coffin was born in Kinston, North Carolina, and he grew up in Larchmont, NY. He graduated from Yale University in 1943 and earned his medical degree from Columbia University in 1947. He completed a fellowship in bacteriology at the University of Chicago and then served as a doctor in the US Air Force while stationed in Lake Charles, Louisiana. He returned to Baltimore with his family, where he completed his residency in pediatrics at Johns Hopkins, and continued teaching and conducting research at the University of Maryland. He worked as an Associate Professor of Pediatrics at UCSF from 1963 to 1990 and as a pediatrician at the Sonoma Developmental Center from 1962 to 1996. 

Dr. Coffin’s career was highlighted by a variety of accomplishments. As a medical researcher, Dr. Coffin authored nearly fifty articles in a variety of medical journals. In 1962, he discovered a synthesis of drugs that is highly effective in treating bacterial infections. It was later adapted and marketed as Bactrim and designated by the World Health Organization as an ‘Essential Medicine.’ He served as a volunteer doctor in the city of Can Tho, Vietnam, for several challenging months during the war.

Dr. Coffin was internationally recognized for his work discovering and describing the Coffin-Siris Syndrome and the Coffin-Lowry Syndrome. He was known for advocating for patients’ rights and often provided free care to families with limited means. Families remember the friendly doctor with the worn leather bag arriving at their homes at all hours in his yellow VW station wagon to treat patients and make them smile with his magic tricks. Dr. Coffin passed away in peace and comfort at home in Berkeley, surrounded by his family, and just shy of his 99th birthday, on January 4, 2022. You can read his full obituary here.

Emery Nova Brewer

Emery was the light of our lives. Her beautiful, contagious smile could brighten any room. From the moment she was born, she showed incredible strength, bravery, and courage. Emery brought endless joy to our family and was always surrounded by love. She was a true fighter. Though Emery passed away at just two years old, those two precious years were filled with more love and happiness than we could have ever imagined. We continue to honour her every single day, sharing her story and her memory with all of her brothers and sisters — keeping her light shining always.

Emily Locke

Emily Locke was a force, both within her personal life and within our small (but always growing) CSS community. Emily was fiercely passionate, incredibly engaged, intimately connected to community and spent endless hours communicating with friends and other families navigating this life within the CSS world. Emily lived in Washington state, and died days after her 29th birthday, in December of 2018.