Dilia was born in San Martin of Loba, a municipality located north of the department of Cesar, Colombia. Her parents were Florentino and Ernestina. She met her husband, Valentin, who was also her cousin, at a dance when she was young, and they felt immediately in love. They had twelve children, although one of them died at childbirth. Her kids’ names are Ana, Fanny, Alba, Everlides, Maribel, Edilson, Denis, Yennys, Delbis, Rafael and Ilber.
I first met Dilia in 2013, during my first trip to Colombia, and hers was one of the first large Latin American HD families I ever visited. She lived with her affected kids and several grandkids, in a family compound in the outskirts in “El Difícil”, in Northern Colombia (Magdalena State). As each kid got progressively sick, they all moved in with her. Most of the women were abandoned by their husbands, and they relocated to be under Dilia’s care. She cared for them until the end of their lives.
Meeting Dilia has been one of the greatest honors in my life. One meets very few people in life like Dilia. She was blessed with extreme elegance and poise, one that could be noticed the moment one met her. Elegance in her eyes, in her smile, in the way she stood.
She radiated determination, and a commitment to family that is so seldom found these days.
Her life was dedicated to care for her family, and even during the most pressing times, she maintained a strong sense of dignity and a deep faith in God, a faith that carried her through very dark times, as her husband and 8 of her kids got sick with Huntington’s and died. Never complaining, she treasured her early life, when her kids were healthy and happy. She would often speak of how lucky she had been in life, to be able to care for and to love her family.
When we sent her the invitation to come to the Vatican to meet Pope Francis, Dilia cried of the emotion, but hesitated to accept the invitation. She did not want to leave her kids alone. I remember having to call her and speak to her about how we would ensure her kids would be safe while she would be away. She finally agreed to come when she felt confident that her kids would be well cared for.
In Rome, Dilia’s story became the story that best symbolizes the terrible nature of this disease, which robs so many people of their lives and affects entire families. She became a sensation during the trip, and everyone wanted to be next to her, to know her, to learn from her about accepting the way life happens, and to do it with pride, with resilience. She was the personification of maternal love.
On Friday evening, Dilia passed away in Santa Marta. She had a fall a few months ago which led to brain hemorrhage. After spending a few weeks in the ICU, she went home with her daughter Everlides. She died peacefully. Factor-H has provided a nurse to care for her two sick daughters.
While her absence will be hard to bear every time I go to Colombia, her life story will continue to be an inspiration for me to persevere, to value life’s good moments, and to continue working for all the new generation of children who will be affected by HD and who might lack someone like Dilia in their lives.
We will continue to care for her kids and grandkids, and her legacy of love and commitment to making life easier for those afflicted with HD will carry on in our hearts and in our lives.
I asked two extraordinary women who also symbolize our quest to make life easier for families affected by HD, Claudia Perandones and Elena Cattaneo, to write something in remembrance of Dilia, which you can read below.
On May 26, 2023, Dilia died at the age of 86 in the city of Santa Marta.
Even now, seeing this on paper, it is hard to believe this is real, because you, Dilia, made us believe that you were invincible.
You fought so many battles in your life that we cannot imagine the dawn without the sun caressing your beautiful face, furrowed with wrinkles in which you surely hid so many tears for the loss of your children.
You overcame the tremendous pain that this incurable disease caused in your family, you faced the difficulties of a complex society that often ignored the needs of your loved ones, and even in that universe, you knew how to be happy and give infinite love.
We can still see you crossing the streets of the Vatican with tremendous beauty and elegance, happy to be surrounded by people to love and help.
Dilia, you are an example, we are saddened because we still had a lot to learn from you.
We know that even with your wings broken by so much pain, you are taking care of your children forever.
Claudia Perandones, Buenos Aires, Argentina.
That May 18, 2017, Dilia was with her daughter Maribel, in the front row, in Rome, to receive the Pope’s blessing and his embrace, together with hundreds of other patients and their families from all over the world.
Dilia confided in us that she thought the disease existed only in her family.
I met Dilia in those days, we walked, danced and ate together. She told us that for years she was happy with her many children, then the disease arrived. In another life Dilia might have been a queen, proud, hardworking, patient, just grateful and caring for others. She was the mother of 11 children, many with the disease. She was the voice that shook journalists in Rome. Some Italians then approached her in a gesture of solidarity.
Our thoughts, our embrace and our gratitude go to her for a life spent valuing its dignity. We all have the task of continuing her legacy.
Elena Cattaneo, Milan, Italy
“Dilia, for some time, had noticed outbreaks of tiredness in her husband; she observed how the fingers of his right hand moved uncontrollably, which he wanted to hide from her, although his head seemed to do the same thing. Her beloved husband got worse; she helped him in what he couldn’t do. He died at the age of forty, broken by this ailment”
Dilia now knew why God had given her so much strength in her soul, and she learned what true compassion is; their children inherited love, honesty, the gift of service. Unfortunately, six of them have already died from the same disease and two more are affected.
One of Dilia’s most cherished memories was the trip she made to Rome.
Factor-H is one of the means that has been put in her way to achieve her purpose, the blessing of Pope Francis now accompanies her always, every day she finds another reason to express her love for one’s neighbor, she understood from that moment what her real mission was. She has wanted to share her story with the sole purpose of exhorting all those who, like her, who find themselves in this situation, and want to keep alive their dreams.
“Faith is born in the hearts of men, and it is what makes them truly brave”