‘I created a foundation to help children like my daughter with speech apraxia’ – Marie Claire Magazine

Fabiana Garofalo Colavini Cunha and her daughter Ana Beatriz: The fight for the transmission of speech apraxia (Photo: personal archive)

Fabiana Garofalo Colavini Cunha and her daughter Ana Beatriz: The fight for the transmission of speech apraxia (Photo: personal archive)

“Marco and I got married in 2007 after ten years of dating – I was living in Sೊo Paulo and he was living in Goiania. In 2009, we had our first child, Marco Antonio. It was an easy pregnancy. He was a smart boy. I was pregnant as soon as I stopped taking the medication.

Ana Beatriz’s pregnancy was so smooth that I did all the prenatal testing in the best labs and hospitals. She was born super healthy. He was a very quiet and quiet kid with no problems.

When my daughter was six months old, my mother-in-law, a psychiatrist, realized that she was not in developmental milestones. Ana did not respond to some of the usual urges related to her age, such as rolling around in her cradle. At this point, we were met by a cousin of her same age who was smarter and sturdier than my girl. I was very worried.

My husband and I sought out multidisciplinary teams made up of several doctors and therapists and speech therapists. She recommended an initial trigger for our 11-month-old daughter. There have been countless physiotherapy sessions where we have also seen some progress and speech therapy. In terms of speech, however, Ana did not evolve.

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My daughter understood what we were saying and carried out the commands we heard, such as clapping, clapping hands and picking up toys. But they still could not utter small words that children of the same age could already speak fluently. Further investigation, visits to the doctor and the pain of having a daughter who is unable to speak.

Once, at the reception of several offices where I took her, I started talking to some mothers and hearing their stories. Later, I realized that I was not alone in this struggle, many families also suffered the same situation. This exchange helped me a lot, I was welcome to continue the search for definitive diagnosis and specific treatment for Ana Beatriz.

“Confirmation of such a lesser known disorder changed all my plans once and for all.”

When she was two years old, we decided to replace speech therapists. After a few months of treatment, new professionals said they suspected a specific childhood speech disorder, but stressed that he was not familiar with the situation as most faculty did not address the issue in depth. This is the first time I have heard of apraxia.

I continued my constant search until I found another speech therapist in Sao Paulo who was studying the subject. When my little girl was three years old, we were diagnosed with apraxia. On the one hand, knowing what she has is liberating, because now, after all, we know which way to go. However, it is always very difficult to accept a diagnosis of one’s child’s disease, which breaks the heart, breaks us inside.

By that time, I had already stopped working to look after my children. But the affirmation of such a little-known disorder changed all my plans once and for all. I fully devoted myself to studying speech apraxia as a child and looking after Ana Beatriz.

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Apraxia, as some still know, is a neurological disorder that affects the planning and programming of sequences of movements required to produce speech. The brain does not send appropriate commands to articulators, making it difficult to produce words. It is a neurological disorder characterized by an inability to perform familiar movements on command without any physical paralysis.

As long as you have the desire and ability to move, the person cannot do the action. This event raises awareness about childhood apraxia of speech, a rare motor speech disorder that affects some children. So specifically, these children struggle to speak clearly because their brains cannot coordinate the movement of their lips, tongue and jaw. The condition is caused by brain damage to areas that control speech ability.

Fabiana has created the Brazilian Association of Apraxia of Speech in Childhood (Photo: personal archive)

Fabiana has created the Brazilian Association of Apraxia of Speech in Childhood (Photo: personal archive)

It is worth noting that this disorder is not uncommon, as it affects two out of every thousand children in the world. So why didn’t I ask about it? I wonder why most of the professionals I went to (neurologists, speech therapists, pediatricians) didn’t recognize the signs or raise any suspicion before? The fact that I did not receive enough warnings and information to help my daughter’s treatment made me very upset.

Since that day, I have been intent on spreading childhood apraxia to as many parents and professionals as possible. Early diagnosis and proper treatment will improve the lives of young people, thus improving everyone’s potential.

Since the speech therapists here know nothing about the subject, the first step we take is to bring a speech therapist who has studied the subject from Sೊo Paulo to train here in Goiania. In addition to spreading knowledge about apraxia, I would like to give these professionals the tools to treat my daughter. We opened registration for the course to other professionals in the city and the demand was good. We have about 50 subscribers.

After a while, I formed a Facebook group and joined other mothers in the same situation. In 2016, along with Marianna and Julian – who have children with apraxia – we founded Abraapraxia – the Brazilian Association of Speech Apraxia in Childhood, a support network for families who train health professionals. We regularly hold meetings and offer courses to bring information to parents, as well as speech therapists, pediatricians and therapists. We have already trained more than 15 thousand people with these courses. Much of this achievement is due to volunteer mothers spread across several Brazilian cities. Our Instagram page already brings together more than 52 thousand people, including family members and health professionals.

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Our biggest effort now is to make May 14th National Childhood Apraxia a Speech Awareness Day. The date is already official and has been 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 on the official calendar. This is one of our struggles in our association.

By adding a date in the national calendar, we make the content more visible. The request is available on our website (https://apraxiabrasil.org/) for collecting signatures and for public appeal. Let’s hope some MPs are sensitive and present a bill to read Brasilia. An early warning for the family to be suspicious and to perceive the signs is necessary for them to seek help soon.

“I still cry every day. It’s painful to have a daughter who doesn’t understand, talk and communicate with other children.”

Another front we are supporting is USP – Genetic Research at the University of Sao Paulo, Genome Center. More than 100 children with apraxia are mapping genes to understand where the disease-causing mutation takes place. It is important for future treatment options and to help families, especially mothers, deal with crime.

I hear so many mothers expressing remorse for the plight of their children, that they are responsible for everything. The genetic defect is not transmitted by the mother, it occurs in the baby. Therefore, the chances of a second child having apraxia are the same for those who already have a child with a diagnosis and those who do not.

All these actions give me plenty of energy, because having a baby with apraxia is not easy. It deals with everyday frustrations. I cry every day, even today. Having a daughter who does not understand, speak and communicate to other children is a tremendous pain. Ana Beatriz is aware of her limitations and this makes her anxious and anxious.

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I see school friends who invite their friends to bed and my ana will never be in them. A friend of mine who has a child with apraxia said that I have had three types of children: one who was born to add, one who taught parents to add differences, and the other who did not add. It is regrettable that the first type is still very few.

I also learned to ask for help. I have a psychologist who supports me in addition to doing sessions with my daughter. Our routine is exhausted. Ana enjoys Speech Therapists, Music Therapy, Psychotherapy, Catechesis, Kumon, English, Jazz, Ballet and goes to school every day. She attends regular school and loves to perform on commemorative dates.

Today, my daughter is 10 years old and her evolution has been a source of pride for our family. Children with apraxia have enormous will and want to move on. The relationship with her older brother is another important pillar, as he is the one who most understands the words Ana is trying to elicit. Many times, Marco Antonio was our greatest translator.

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Ana is now able to formulate some sentences and use words that allow her to communicate even with severe apraxia. Ana and Marco Antonio are happy in my life and in my husband’s life. We really enjoy traveling as a family. Ana brought me a purpose, the challenges are endless, 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 like her. Every child deserves to have a voice. ”

Fabiana with her whole family (Photo: personal archive)

Fabiana with her whole family (Photo: personal archive)

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