The II Edition of the solidarity action ‘Ellas Cuentan’ already has its selected stories. The initiative, launched in 2021 by the Malasmadres Club and Cinfa, gives voice to those women who fight every day against the disease, either their own or that of their sons or daughters. On this occasion, the call had the participation of 335 women from all over Spain with their stories of strength and improvement.
In the category ‘Women living with an illness or disability‘, the selected ones have been Esther Portillo (Toledo) and Marta Cucurella (Barcelona); and in the category ‘Mothers caring for children with illnesses or special needs‘, the selected stories have been those of Lydia Lorenzo (Barcelona) and Silvia Declara (Cáceres). In addition to this recognition, each of the four women will receive a financial contribution from Cinfa of 3,000 euros destined to improve their quality of life.
In honor of them, last Wednesday a gala was held in Madrid to recognize and give voice to all the stories of this second edition, an event that was also attended by the ambassadors of this solidarity action: Lucía Galán (@luciaamipediatra), Eva Moral, (@evamoral82) and Aroa Arranz (@nos_cambio_la_vida).
Esther Portillo
Esther was diagnosed with ALS (Amyotrophic Lateral Sclerosis) in June 2020. “That day, the world fell on us. I have 3 children, Javier, 13 years old, Patricia, 12 years old, and Esther, 9 years old, and they are the ones who have suffered the most. They always told me that I went to many doctors, but they asked me why no one cured me, ”she says. For give visibility to this disease, her sister has played a key role, who encouraged her to open an Instagram account to tell her day to day. “We must give voice to a disease that has no cure and that needs a lot of care and resources,” says Esther. “On this way, my children have been and are my main engineand who have led me to show what it is like to live with ALS”.
“When I received the ALS diagnosis, the world fell on us”
Thanks to the help received, Esther will pay part of the cost of an electronic device that will allow her to continue writing their stories through the movement of their pupilssince it is practically impossible for him to continue doing it with his hands.
Martha Cucurella
Martha suffers six rare diseases, such as the Nutcracker syndrome and Ehlers-Danlos syndrome, which he regularly talks about on social networks. “When I saw that a second ‘They Count’ contest was being organized, I thought it was a great opportunity to give visibility to my six rare diseases, usually very little known and poorly described medically. Due to the lack of attention, protocols and treatments, most of these patients tend to be labeled exaggerated and even referred to psychiatry”, he explains.
“This initiative is an opportunity to give visibility to my 6 rare diseases”
Marta will allocate the aid to the acquisition of splints for your joints, as well as osteopathy sessions and the general care he needs, due to his reduced mobility. “I also want to continue giving visibility to these vascular compression syndromes through the support group for patients that I have created. This is a long-term struggle and I try to ensure that what I have suffered is not suffered by other people, ”she says.
Lydia Lawrence
Kai, Lydia’s son, was diagnosed with Down’s Syndrome and, since February of this same year, he has also suffered serious undiagnosed brain damage. “We have experienced very difficult times in recent months,” he shares, “but since the summer his evolution has been good and We are confident that Kai will continue to progress.”, he says hopefully.
“We have experienced very difficult times with my son Kai, but we trust that he will continue to progress”
As she explained to the Malasmadres community, Lydia will dedicate the help received to therapies to improve the quality of life of little Kai who, in addition to the pathologies mentioned above, also has an important lack of muscle mass as a result of having spent four months hospitalized.
Regarding the specific therapies they plan to carry out, Lydia explains that she will take Kai to “speech therapy to work on swallowing and his oral hypersensitivity, and also to physiotherapy to recover his mobility”.
Silvia declares
Silvia is the mother of Julen, a child with a rare disease of which only 35 cases are known in Spain and that there is no cure. For her, this Second Edition of ‘Ellas Cuentan’ was an impulse to take off the heavy backpack that she carried in silence. “I have borne a tremendous burden during these three hard years of learningof constant struggle, comings and goings to the hospital, but also a lot of love and acquiring some values that you only acquire when you live with the disability and with such a disease. At three months we were told that our baby had a syndrome called STXPB1; From that moment I knew that my life would no longer be like before”, says Silvia.
“This action has been an impulse to take off the heavy backpack that I was carrying in silence”
Silvia will allocate the aid “to therapies for Julen to be as independent as possible, because, to this day, he is a child 100% dependent on me ”. Hydrotherapy, neurological physiotherapy, speech therapy and occupational therapy will help Julen to continue progressing. “He will be setting the pace and, without a doubt, leading the way,” confirms Silvia.
Give voice to functional diversity
“Meeting the 4 selected this year and their stories is an incredible boost for all the Malasmadres. They are the example of many invisible struggles that we want to recognize from the project ‘Ellas Cuentan’, with Cinfa”, comments Laura Baena, founder of the Club de Malasmadres. And for this reason “we want to create a supportive community with all the women who have taken the brave step of sharing their stories and making them more visible. Because their stories and they tell ”, she remarks.
For his part, Enrique Ordieres, president of Cinfa, states: “Our most sincere thanks to the 335 women who have shared their personal stories in this second edition and, of course, to the 4 selected, who with their example teach us that life, despite its difficulties, must be lived with passion”.
All the life stories submitted to the second edition of this solidarity initiative are available on the website ellascuentan2022.es.
The initiative, promoted by the Malasmadres Club and Cinfa, seeks to make visible and give a voice to women who face different vital struggles against the disease.