“It’s as if we’ve completely lost control of everything,” is a daily feeling for Lusia Saraiva, mother of Flor, a child with multiple disabilities, one of which is epilepsy.

The mother's story was heard last Saturday (13), in a class of the Multidisciplinary Module of the Refractory Epilepsy Clinic of the Santos Dumont Institute (ISD) – for the 4th class of the Multiprofessional Residency in Health Care for People with Disabilities, of the Institute.

Lusia Saraiva and Luciana Monte, mothers who are part of the Apoie Epilepsia group, were invited to tell the residents their stories and those of their children with the disease. The ISD Multiprofessional Residency brings together professionals from the areas of physiotherapy, social work, psychology and speech therapy. 

Below, check out the main texts of the stories they heard:

“All we have left at this moment is to care and love”

After complications during childbirth, Flor was born apparently dead and was resuscitated. The first news her mother, Lusia, received about her newborn daughter was “she has seizures non-stop.” “From that moment on, the word seizure entered my life. Since then, I have had 11 years of daily seizures. Epilepsy arrived, took hold, and won’t go away. All we have left at this moment is to care and love.”, he said. 

Luciana was diagnosed some time after the baby was born. At seven months old, her son Leonardo had a severe case of the flu. After that, they spent days going from one hospital to another until they were able to understand what was really happening to the baby. “After three days in the hospital, we got the diagnosis and, during the first week in the hospital, he was in a coma. No one knew what was going to happen to Leo. There were tests and more tests, and I only realized he was alive after a month in the ICU, when he opened his eyes and was able to breastfeed. I was scared, I had never seen an epileptic seizure, my son kicking his leg and rolling his eye and I didn’t know what that was,” she said. 

Epilepsy is considered one of the most common neurological diseases that exist and, according to the World Health Organization (WHO), affects about 50 million people worldwide.

The disease can cause convulsions or non-convulsive seizures, including “absence” seizures – in which the person seems to “switch off” for a few moments, in addition to sensations such as distortions of perception, uncontrolled movements of a part of the body or sudden fear, as description of the Brazilian League of Epilepsy.

Professional performance that makes a difference 

During the class, the mothers themselves pointed out: it is not easy to treat a person with epilepsy, they are daily crises that often happen in doctors' offices.The difference lies in how the child and the family are dealt with, in the professional's perspective, in the willingness to help and support. During our journey, we have had examples of professionals who dedicated themselves a lot to our children and others who rejected them. Think about someone you love very much and then think about how you would like that person to be cared for by a professional if they had epilepsy”, reflects Luciana Monte. 

During the class, Lusia spoke about the difference between the dreams of mothers of children with and without epilepsy. According to her, the mother of a child without any health condition dreams that her child will study medicine, get married, be happy and have children.My biggest dream is that my daughter has a day without having a seizure, that she is calm and gives me a smile.”, she reported emotionally. 

Flor smiled once, during a consultation at the Anita Garibaldi Health Education and Research Center at ISD. “One of the times I saw Flor happiest was during a therapy session at ISD, when she was holding a batuquinho (a small drumstick) and smiling; it was the first time I saw her smile for an external reason and it made me extremely happy, it was one of the happiest moments throughout this entire journey. This shows how each action you take as professionals makes a difference for us, mothers and patients who are on the other side,” said Lusia.  

For neuropsychologist and multidisciplinary preceptor at ISD, Joísa Araújo, it is necessary to look beyond the health condition. “We need to work hand in hand with people and families, so that we can build together both knowledge about the health condition, as well as understanding what it is like to live with it and how we therapists can help”, she stated. 

“You decide whether you will live in mourning or in struggle”

Flor and Leo's mothers are part of the group Apoie Epilepsia, along with Andrea Hart, mother of Helena, a child who also lives with epilepsy. They reported that pain brought them together and that they chose to live through the fight. Since Apoie was created in 2016, the group has raised the debate about epilepsy in Rio Grande do Norte. Public hearings at the Natal City Council and the Legislative Assembly of RN have already brought together representatives from various sectors of society to hear the demands of families and patients with epilepsy. 

The group also carries out Purple Day activities in Natal, the day on which International Epilepsy Awareness Day is celebrated – March 26th – and the entire month is filled with activities that reinforce the date. “Every year that we celebrate Purple Day, we hear stories from people who know someone with epilepsy and we see that the disease is present in many places, but people don’t talk about it. Apoie aims to connect, empower and bring information to these people”, concludes Luciana. 

The class, which featured the mothers' testimonies, was also featured on @isdnarede, the Santos Dumont Institute's Instagram profile. Check out the post below:

 

 

 

 

 

 

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A post shared by Instituto Santos Dumont (@isdnarede)