Many of the patients cannot receive hugs due to the condition of their wounds …
Many of the patients cannot receive hugs due to the condition of their wounds … the only way to replace these caresses is with loving looks, with inclusive attitudes, in such a way that they feel strong and courageous in the midst of their health condition.
"Nury wants to see you, she is not well, you must prepare daughter" … These words of Sister Valeriana echoed in her mind … She little by little began to accept a reality, from which many times, she wants to escape, and would like to change each time she sees one of her darling leave this world, because of one of the rare diseases: Epidermolysis Bullosa, or Crystal Skin.
This episode, like many others, marked the life of Liliana Consuegra Bazzani, a doctor who gives her heart and soul to the Debra Foundation, an entity that watches over patients diagnosed with this disease, classified as rare. For her, Nury was not only her "little darling", she was much more. That is why, that day, when she arrived at the hospital, she tried by all means to approach her. But, upon arrival, she found a phrase that still makes her voice tremble when she remembers: "She died five minutes ago."
"I was frozen … I approached her cubicle, she still had the oxygen mask on, I took it off, hugged her … Not only her body but also her soul, to say goodbye … I don't know how I got the strength to say: “Cielita”. Finally, you will not have any more injuries or pain, I believe that the Virgin, fulfilled your wish … secret but evident”.
Nury is one more angel, as Dr. Consuegra tells her patients, who have suffered from this disease, of a genetic nature, and it involves the formation of blisters on the skin, which are difficult to heal, and highly sensitive to any rubbing or friction. They have found in Debra Colombia a real family where the first thing this doctor dressed as an angel tells them is: "Welcome to the Debra family … You are not alone; we will always be there to relieve your pain."
Love on the skin
Since she was a child, Dr. Liliana Consuegra Bazzani felt strongly motivated to help others; being a college student and even at the University, she participated in many volunteer groups, just because she liked to serve people. And she has not stopped doing it, that is why, from her profession, she is in charge not only of being a doctor, but of wearing that white uniform, as if she were a true angel.
She received her professional degree from Universidad del Bosque in Colombia. She has a master's degree in Child Nutrition from the International University of Andalucía in Spain, as well as training in complementary alternative medicines at the Universidad del Bosque and the International Homotoxicology Society.
She practices her profession in Bogotá, where she is aware of patients with Epidermolysis Bullosa, or Crystal Skin. Illness she encountered when she was volunteering at the Luz y Vida Homes, after her return from Spain. There she met two girls, with this condition. They were the engine that prompted her to investigate more about this rare disease and to investigate how that pain, which is for life, was more bearable. Liliana treated their wounds with calendula creams, aloe vera and covered them with vinyl paper.
Debra International in Colombia
The treatment of the girls she met at the Foundation was successful. "I presented the cases at an alternative medicine congress … Then, other patients with the same condition referred me, for whom with family and friends we could take the next step in the healing process, through dressings."
Dr. Consuegra immediately began conversations with Debra Chile Foundation, and years later Debra International entrusted her with the mission of opening Debra in Colombia. And she, with that strength and integrity that characterizes her, was measured in this challenge. In the midst of mixed emotions and feelings, laughter and tears, and few hugs, she has become the angel of hundreds of patients who see her as their savior.
To carry out the Debra Colombia Foundation, she, with very good convening power, gathered a group of contacts to help her manage the legal opening of the Foundation and after several processes, in 2009, Debra opened her wings to help the patients.
But… What have children and patients with this disease taught you? She responds that to value the essential things in life much more. "Not to complain about irrelevant things" … and especially, "To fight for the fundamental rights of the most vulnerable"
On October 25, the International Day of Epidermolysis Bullosa or Butterfly Skin is commemorated worldwide. In particular, in Colombia some 72 patients are treated, but it is considered that there are 500,000 registered patients in the world.
The challenges for the Debra Foundation, led by Dr. Consuegra, will be to walk and walk with giant steps to bring the best treatments, and thus improve living conditions.
Angels with blessings
Liliana Consuegra has lived magical and wonderful moments, always hand in hand with her darlings. But, without a doubt, the most exciting was when Pope Francis I, on her visit to Colombia in 2017, blessed a group of her children. "That day I felt something very special … I felt the presence of God too close, relieving those in pain."
For her, what is beautiful and special about being at Debra is “enhancing the capacity to serve the most vulnerable”, for this reason, she constantly joins efforts to guarantee the quality of life for patients and their families from different perspectives.
Without a doubt, she is a blessing to all these children and patients who come to her whenever they need her. When she sees them, she only communicates love in the midst of so much adversity, she feels the pain, as if it were her own. She recalls with a certain nostalgia, once one of her patients was asked about her pain and she replied that “the looks of the people” were what gave her the most pain and made her sad.
It is inevitable that Liliana Consuegra will not shed tears when she receives the news that one of her patients has passed away. "We are always going to miss those who leave and have been an important part of our lives."
For her, the hardest thing is to put herself in the place of the mothers, because the death of her children moves her feelings. And always, there will be more than one tear. The important and valuable thing in these cases is to create awareness that these heroes stop having pain… “That soothes the soul. I have faith in God, and He lovingly welcomes you”.
Teachings? Many, more when directly involved with this painful condition. And so, amid emotions charged with nostalgia, she remembers another of the episodes that marked her life, when she cared for a peasant boy. He called her the next day and said: "Thank you because for the first time I took off my pajamas and my skin did not fall off" … And it is that phrase, it is what allows her to continue with this mission.