‘I set up a foundation to help kids like my daughter with speech apraxia’ – Mary Claire Magazine

Fabiana Garofalo Kolavini Cunha and her daughter Anna Beatriz: Fighting to Promote Speech Apraxia (Photo: Private Archive)

“Marco and I got married in 2007, after dating ten years apart – I lived in Sao Paulo and he was in Guinea. In 2009, we had our first child, Marco Antonio. It was a very simple pregnancy. He was a smart boy. And charming. So we were excited for the second child. As soon as I stopped taking the medicine, I got pregnant.

Anna Beatriz’s pregnancy was also very smooth, I did all the prenatal tests in the best laboratory and hospital. She was born super healthy. She was a very calm and quiet child, without any problems.

My daughter was six months old when my mother-in-law, a psychiatrist, realized she was not in the development milestone. Anna did not respond to some general stimuli for her age, such as wandering in her goats, for example. At this point, we got a visit from a cousin of her age, who was smarter and tougher than my daughter. I was very worried.

My husband and I have searched for a number of doctors and multidisciplinary teams consisting of therapists and speech therapists. They recommended early stimulation for our 11-month-old daughter. There were numerous physiotherapy sessions, where we also saw some progress and speech therapy. However, from the point of view of speech, it has not been developed at all.

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My daughter understood what we were saying and obeyed the commands we asked for, such as clapping, holding hands, and picking up toys. But he still couldn’t say the little things that kids of the same age already said comfortably. With that, we went to the doctors for further investigation and for the pain of a girl who could not speak.

Once, I took her to numerous office receptions, I started talking to some moms and listening to their stories. Then, I realized that I am not alone in this struggle, many families have gone through the same situation. This exchange has helped me a lot, I feel welcome to go ahead with a specific diagnosis and a specific treatment for Anna Beatriz.

“Confirmation of such a little-known disease has changed all my plans once and for all.”

When she was two years old, we decided to change the speech therapist. After a few months of treatment, the new professional said he suspected a certain childhood speech disorder, but insisted that he did not know the condition well, as most faculties did not address the problem in depth. I first heard of apraxia.

I continued my search until I found another speech therapist in Sওo Paulo who was studying the subject. When my youngest daughter was three years old, we were diagnosed with apraxia. On the one hand, it was really liberating to know what he had, because now, above all, we know which way to go. However, it is always very difficult to diagnose one’s own child, it breaks the heart, breaks us inside.

By then, I had already stopped working to take care of my kids. But confirming such a little-known disorder changed all my plans once and for all. I devoted myself entirely to the apraxia study of childhood speech and to the care of Anna Beatriz.

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Apraxia, which very few people still know, is a neurological disorder that affects the planning and programming of the movement sequences needed to create speech. The brain does not send proper commands to the articulators, thus making it difficult to make sound. It is a neurological disorder characterized by the inability to perform known movements in command without any physical paralysis.

As long as one does not have the will and ability to move, one cannot perform the action. This phenomenon raises awareness of childhood speech, a rare motor speech disorder that affects some children. So precisely, these children struggle to speak clearly because their brains cannot coordinate the movement of their lips, tongue and jaw. This condition is caused by damage to the brain in the area that controls the ability to speak.

Created by Fabiana Brazilian Association of Apraxia of Speech in Childhood (Photo: Personal Archive)

Created by Fabiana Brazilian Association of Apraxia of Speech in Childhood (Photo: Personal Archive)

It should also be noted that this disorder is not uncommon, as it affects two out of every thousand children in the world. So why have I never heard of it? I was wondering why I went to most of the professionals (neurologist, speech therapist, pediatrician) who didn’t recognize the symptoms or raised any suspicions before? The fact that I did not get enough precautions and information to help my daughter’s treatment made me very unhappy.

From that day on, I made it my mission to spread the word of childhood to as many parents and professionals as possible. Early diagnosis and proper treatment greatly improves the lives of children, thus developing everyone’s potential.

We took the first step to bring in a speech therapist who studied the subject from Sao Paulo in Guinea for training, since the speech therapists here know nothing about the subject. I wanted to give these professionals tools that would treat my daughter, as well as spread knowledge about apraxia. We opened the registration for the course for other professionals in the city and the demand was great. We had about 50 customers.

After a while, I created a Facebook group and joined other mothers in the same situation. In 2016, together with Mariana and Julian – who also have apraxia in their children – we established Abrapraxia – the Brazilian Association of Speech Apraxia in Childhood, a support network for families that provides training for health professionals. We hold meetings and offer regular courses, both to bring information to parents, as well as to speech therapists, pediatricians and therapists. We have already trained over 15,000 people with these courses. Much of this achievement is due to volunteer mothers, who are spread across several cities in Brazil. Our Instagram page already brings together over 52,000 people, including family members and health professionals.

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Our greatest effort is now to make May 14 National Childhood Apraxia Speech Awareness Day. The date is already official and recognized in some countries, such as the United States and Canada, where it is called ‘Apraxia Awareness Day’. But here in Brazil we have not yet achieved this victory and it is not in the official calendar. This is one of our struggles here in our association.

By including the date in the national calendar, we will give the subject more visibility. A petition is available on our website (https://apraxiabrasil.org/) to collect signatures and run a public petition. We hope that some MPs will be sensitive and introduce a bill to read Brasilia. Early warning is essential so that the family becomes suspicious and understands the symptoms and seeks help immediately.

“I still cry every day. Having a girl that other kids don’t understand, who struggles to talk and communicate, is a pain.”

Another front that we support is the USP – Genetic Research at the University of S সাo Paulo, the Genome Center. More than 100 children with apraxia are mapping genes to understand where mutations cause the disease. This is important for future treatment options and to help the family, especially mothers, deal with guilt.

I have heard many mothers still feel sorry for their children, as if they were responsible for everything. Genetic defects are not transmitted by the mother, they occur in the child. Therefore, the chances of having a second child apraxia are the same for those who already have a diagnosis and those who do not.

All of these actions give me a lot of energy, because having a baby with apraxia is not easy. It is dealing with everyday frustration. I cry every day, to this day. Having a daughter that other children don’t understand, who struggles to talk and communicate, is a great pain. Anna Beatriz is aware of her limitations and this makes her anxious and nervous.

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I have seen school friends who invite their friends to sleep and my Anna is not among them. A friend of mine, who also has a child with apraxia, told me that there are three types of children with whom we have a relationship: those born to be included, those whose parents teach them to include differences, and others who do not include at all. It is unfortunate that the first type is still very rare.

I also learned to ask for help for myself. I have a psychologist who supports me, as well as doing sessions with my daughter. Our routine is tiring. Anna does Speech Therapy, Music Therapy, Psychotherapy, Cachesis, Cummins, English, Jazz, Ballet and goes to school every day. She attends school regularly and likes to perform on Memorial Day.

Today, my daughter is 10 years old and her evolution is a source of pride for our family. Children with apraxia have a lot of willpower and they want to move on. The relationship with his older brother is another important pillar, as he is the one who understands the most and tries to pronounce the words. Many times, Mark Anthony was our great translator.

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Anna is now able to form a few sentences and use words that allow her to communicate, even in severe apraxia. Anna and Marco Antonio are my life and the joy of my husband. We really enjoy traveling as a family. Anna brings me a purpose, the challenges are constant, but the benefits come every day. As long as I am in this world I will fight and encourage my daughter every step of the way and support everyone who is in the same position as her. Every child deserves a voice. “

Fabiana with her entire family (Photo: Personal Archive)

Fabiana with her entire family (Photo: Personal Archive)

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