Her story
In February 2024, my mother Mari Carmen was diagnosed with malignant uterine PEComa — one of the rarest soft-tissue sarcomas known to medicine. She was 85 years old.
PEComa — Perivascular Epithelioid Cell tumor — is so rare that most oncologists will never see a single case in their career. There is no established standard of care. Research is almost nonexistent. My mother had almost no treatment options available to her.
Learn what PEComa is — National Organization for Rare Disorders
Mari Carmen went from diagnosis to leaving us in four and a half months. On June 22, 2024 — my 55th birthday — she passed away. She was 85.
Through those four and a half months, the Gynecology and Oncology teams at Hospital Universitario La Paz and the Sarcoma Unit at the Fundación Jiménez Díaz in Madrid cared for her with extraordinary skill and humanity, and the Community of Madrid’s palliative care unit cared for her at home, as she wished. Against a cancer that offered so few options, they gave her — and our family — their very best. We will always be grateful to them.
From the day of the diagnosis, she cared for our mother without pause. She opened her home to Mom and Dad, and she gave Mom her last wish — to be at home, surrounded by all her family, on her final day. Mom was never alone. That was Cristina.
She had flown from Spain to New York in 2015 for my first marathon — the New York City Marathon — her first time seeing me race. She stood alongside my wife Sandra, my daughter Alejandra, my son Rafael, my goddaughter Maria, and my nephew Fernando. It was probably one of the happiest trips of her life.