Síndrome de Willians - Programa Especial 27/07/2013

Programa Especial

19 Aug 201304:06

Summary

TLDRIn this heartfelt video script, Rita shares her journey as the mother of five children, including Camila, who has Williams Syndrome. Rita explains the physical and intellectual challenges associated with the rare condition, such as distinctive facial features and learning difficulties. She also highlights Camila's strong social skills and sensitivity to sound. Rita emphasizes the importance of love and patience in supporting Camila, who undergoes various therapies and activities to enhance her development. The script captures the bond between mother and daughter, as they play and communicate, showcasing the resilience and love in the face of adversity.

Takeaways

👨‍👧 Rita is the mother of five children, including Camila who has Williams Syndrome.
🏥 At birth, no one mentioned that Camila had any type of syndrome, and it was later diagnosed.
🧬 Williams Syndrome is characterized by distinct physical features, such as a wide mouth and unique ear shape, and also affects intellectual and social abilities.
🎼 Individuals with Williams Syndrome often have a strong auditory sensitivity and can remember music and news reports they hear.
🌙 The syndrome can cause sleep disturbances and difficulties in eating, common among babies with the condition.
😢 Babies with Williams Syndrome are often very fussy and cry a lot, which was the case with Camila in her early years.
👩‍⚕️ Rita initially did not understand the severity of Williams Syndrome, thinking it could be treated with medication, but later learned there is no cure.
💊 The doctor advised Rita that the only 'medicines' she can always carry with her are love and patience to improve Camila's life.
👩‍⚕️‍🦼 Camila has seen various specialists, including cardiologists, nephrologists, and speech therapists, to address the different aspects of her condition.
🏊‍♀️ Physical activities like swimming and occupational therapy are part of Camila's routine to help with her development.
🎉 Camila enjoys listening to music, especially Justin Bieber, and playing on the computer, showing her personal interests despite her condition.
🤝 Rita emphasizes the importance of patience, love, and dedication for families dealing with Williams Syndrome, as received advice from others.

Q & A

What is the name of the mother in the script?
-The mother's name is Rita.
How many children does Rita have?
-Rita has five children.
What is the name of Rita's daughter with Williams Syndrome?
-Rita's daughter with Williams Syndrome is named Camila.
What are some of the physical characteristics of Williams Syndrome mentioned in the script?
-Some physical characteristics of Williams Syndrome mentioned are a wide mouth, different ear shape, and unique hands.
How does the script describe Camila's intellectual part?
-Camila's intellectual part is described as having difficulty with learning.
What is mentioned about Camila's social skills?
-Camila's social skills are described as very good; she can remember TV programs and news reports.
What challenges does Camila face due to Williams Syndrome?
-Challenges faced by Camila due to Williams Syndrome include difficulty sleeping, eating, and being very sensitive to sounds.
What was Rita's initial reaction when she learned about Williams Syndrome?
-Rita's initial reaction was to think about finding a remedy, not fully grasping the implications of the syndrome.
What advice did the doctor give Rita about treating Williams Syndrome?
-The doctor advised that there is no cure for Williams Syndrome and suggested that Rita should focus on giving Camila a better life with love and patience.
What kind of medical professionals did Rita take Camila to see?
-Rita took Camila to see a cardiologist, nephrologist, otolaryngologist, ophthalmologist, and a geneticist.
What activities did Rita involve Camila in to improve her condition?
-Rita involved Camila in physical activities like swimming and occupational therapy to help with her development.
What is Camila's favorite activity according to the script?
-Camila's favorite activity is listening to music, particularly from Justin, whom she is a fan of.
What does the script suggest about the support Camila receives from her family?
-The script suggests that Camila receives a lot of love, patience, and dedication from her family, especially her mother Rita.

Outlines

00:00

👨‍👩‍👧‍👦 Rita's Journey with Her Daughter Camila's Williams Syndrome

Rita, a mother of five, introduces her daughter Camila who has Williams Syndrome, a rare condition characterized by distinct facial features, learning difficulties, and social strengths. Rita recounts her initial lack of awareness about the syndrome and her subsequent efforts to provide Camila with the best possible care. She describes the challenges Camila faces, such as sleeping and eating difficulties, and her exceptional memory and sensitivity to sounds. Rita also shares her experience of seeking medical advice and the importance of love and patience in dealing with the syndrome. The narrative includes a visit to various specialists and the implementation of physical therapy and occupational therapy to enhance Camila's development.

Mindmap

Keywords

💡Williams Syndrome

Williams Syndrome is a rare neurodevelopmental disorder characterized by distinct physical features, learning difficulties, and strong social skills. In the script, it is mentioned that Rita's daughter, Camila, has this syndrome, which affects her physical appearance, intellectual development, and social interactions. The syndrome is portrayed as a central theme of the video, highlighting the challenges and the love and patience required to care for someone with this condition.

💡Physical Characteristics

Physical characteristics refer to the distinct features that individuals with Williams Syndrome may have, such as an 'elfin' facial shape, a wide mouth, and unique ear shape. These features are part of what defines the syndrome and are mentioned in the script as some of the ways Camila's appearance differs from typical development.

💡Learning Difficulties

Learning difficulties are challenges faced by individuals with Williams Syndrome in their intellectual development and educational progress. The script mentions that Camila has a hard time with learning, which is a common aspect of the syndrome and an important part of understanding the support she requires.

💡Social Skills

Social skills in the context of the video refer to the strong interpersonal abilities often found in individuals with Williams Syndrome. Despite other challenges, Camila is described as having a good social side, being able to remember TV programs and news reports, which is an example of her social cognitive strengths.

💡Auditory Sensitivity

Auditory sensitivity is a heightened sense of hearing that can cause difficulties for individuals with Williams Syndrome, as mentioned in the script. It is part of the syndrome's impact on Camila's life, affecting her sleep and daily routines.

💡Medical Professionals

The script refers to various medical professionals such as a cardiologist, nephrologist, otolaryngologist, ophthalmologist, and geneticist, who are involved in the care of individuals with Williams Syndrome. These professionals play a crucial role in managing the health aspects of the syndrome.

💡Therapy

Therapy in the script includes occupational therapy and physical activities like swimming, which are part of Camila's routine to improve her physical and cognitive development. These therapies are essential for enhancing her quality of life and addressing the challenges posed by Williams Syndrome.

💡Patience

Patience is a key virtue emphasized in the script for dealing with the challenges of Williams Syndrome. Rita's experience suggests that enduring and understanding patience is necessary when caring for Camila, reflecting the long-term commitment required by parents and caregivers.

💡Love

Love is portrayed as an essential component of caring for someone with Williams Syndrome. The script suggests that love, along with patience, are the 'two medicines' that Rita carries with her to provide the best care for Camila, highlighting the emotional support crucial for individuals with the syndrome.

💡Adaptation

Adaptation in the context of the video refers to the process of learning to live with and manage the challenges of Williams Syndrome. Rita's journey from initial disbelief to acceptance and proactive care for Camila exemplifies the adaptation needed by families dealing with such conditions.

💡Childhood

Childhood is a significant aspect of the video's narrative, focusing on Camila's early years and the behaviors typical of children with Williams Syndrome, such as being very fussy and crying a lot. The script uses Camila's childhood to illustrate the developmental stages and the need for special attention and care.

Highlights

Rita has five children, with Camila having Williams Syndrome.

No one knew Camila had a syndrome when she was born.

Williams Syndrome is characterized by distinct physical features like an elfin face, wide mouth, and different ear shape.

People with Williams Syndrome often have intellectual difficulties and social strengths.

Camila has a strong auditory sensitivity and struggles with sleep and eating due to her syndrome.

Rita initially didn't understand the severity of Williams Syndrome, thinking there was a cure.

The doctor told Rita there is no cure, but love and patience can help improve Camila's life.

Camila sees various specialists like cardiologists, nephrologists, and otolaryngologists for her condition.

Physical activities like swimming and occupational therapy are important for Camila's development.

Rita tries to provide the best possible care for Camila, accepting and adapting to her situation.

Camila enjoys listening to music, especially Justin Bieber, and playing on the computer.

At school, Camila likes to play and has friends named Ana Maria and Bia.

Rita advises others to have patience, love, and dedication when dealing with children with Williams Syndrome.

The transcript shows the bond between Rita and Camila as they play and clap hands together.

The family receives support and shares their experience to raise awareness about Williams Syndrome.

The interview highlights the importance of early intervention and multidisciplinary care for children with Williams Syndrome.

Rita emphasizes the need for understanding and acceptance of the unique challenges faced by individuals with Williams Syndrome.