حالة باقر الصحية أثقلت كاهل عائلته ومناشدات لوزارة العمل بصرف راتب يسد تكاليف علاجه
Summary
TLDRThe video discusses the case of an 11-year-old boy named Baqir Abbas, who suffers from Prader-Willi Syndrome, a genetic disorder causing severe obesity, poor eyesight, and developmental delays. His family struggles with the financial and emotional burden of his condition, appealing for support from the Ministry of Social Affairs. The program highlights the challenges faced by such families and encourages viewers to report similar cases for media exposure. Baqir, despite his health issues, is portrayed as a kind and welcoming child. The video concludes with a call to action to assist his family.
Takeaways
- 🙏 The program expresses gratitude to those who inform them about cases that need assistance in the community.
- 👦 A boy named Baqir Abbas, aged 11, is suffering from a genetic disorder called Prader-Willi syndrome.
- 📉 The condition causes physical changes such as obesity and weak vision, greatly affecting Baqir's quality of life.
- 💊 Baqir's family is struggling financially due to the high cost of medical treatments.
- 🧬 Prader-Willi syndrome is a genetic condition caused by a chromosomal error during fetal development.
- 🧠 Medical reports show Baqir has a 75% intellectual disability, although he appears cheerful and friendly.
- 💼 The family has reached out to the Ministry of Labor and Social Affairs to request financial assistance.
- 📢 The program calls on the Ministry to provide support for Baqir's ongoing medical expenses, which are overwhelming for the family.
- 🎥 The program visits Baqir's family to document their daily challenges and share their story with a broader audience.
- 🤝 The program encourages viewers to report similar cases to help raise awareness and provide support for those in need.
Q & A
Who is the main subject of the script?
-The main subject of the script is a boy named Baqir Abbas, an 11-year-old child suffering from Prader-Willi Syndrome.
What is Prader-Willi Syndrome?
-Prader-Willi Syndrome is a genetic disorder caused by the deletion of seven genes on chromosome 15. It leads to symptoms such as excessive hunger, obesity, poor muscle tone, weak eyesight, and cognitive impairments.
What are the physical and mental challenges Baqir faces due to his condition?
-Baqir struggles with severe obesity, poor eyesight, intellectual disability, and requires constant assistance. His condition also causes developmental delays and behavioral issues.
What do Baqir's parents hope for from the Ministry of Labor and Social Affairs?
-Baqir’s parents are seeking financial assistance from the Ministry of Labor and Social Affairs to help cover the high costs of his medical treatments and daily care.
How is Baqir's cognitive development affected by his syndrome?
-Baqir has a reported intellectual disability with 75% cognitive impairment. This affects his learning and ability to perform tasks independently.
What kind of support has Baqir's family received so far?
-Baqir’s family has raised awareness about his condition, and a teacher has been granted leave to assist him at home. However, the family is still overwhelmed by the medical expenses and caregiving demands.
How does Baqir’s condition affect his daily life?
-Baqir faces difficulty with mobility due to his obesity, has trouble seeing, and needs constant supervision. He sometimes even falls asleep while sitting due to his condition.
What message does the program host convey to the audience?
-The host encourages viewers to report similar cases they may know of, so the program can provide support and raise awareness about such situations.
What is the host's overall goal in sharing Baqir’s story?
-The host aims to raise awareness about Baqir's condition, highlight the family’s financial struggles, and advocate for governmental support to help with his care.
How does Baqir’s personality come across in the video?
-Despite his challenges, Baqir is described as a kind, welcoming, and positive child who enjoys interacting with visitors, reflecting his strong spirit.
Outlines
🙏 The Struggles of Baqir's Family
The speaker expresses gratitude towards those who contact the program and highlight difficult cases in the community. The focus is on Baqir, an 11-year-old boy with Prader-Willi Syndrome, a genetic disorder causing severe obesity and poor eyesight. His family is struggling with his medical care and expenses. Despite the challenges, Baqir is described as a cheerful and welcoming boy. His family is seeking financial help, particularly from the Ministry of Labor and Social Affairs, to cover his high medical costs.
💪 Baqir’s Resilience Despite Health Challenges
Baqir, although suffering from Prader-Willi Syndrome, is a positive and energetic child. He warmly welcomed the visitors, despite the hardships he faces, including obesity, delayed puberty, and behavioral issues. His medical reports are detailed, diagnosing his condition clearly. The segment ends with the reporter, Firas Ghudhanfar, expressing his admiration for Baqir’s spirit and reiterating the program’s commitment to following up on his case.
Mindmap
Keywords
💡Prader-Willi Syndrome
💡Obesity
💡Chromosome 15
💡Mental disability
💡Family hardship
💡Government assistance
💡Medical expenses
💡Developmental delays
💡Vision impairment
💡Community support
Highlights
The program thanks those who reach out to share cases from the community, as they help highlight the situations of individuals who can't voice their struggles.
The case discussed is of an 11-year-old boy named Baqir Abbas, who suffers from a rare genetic disorder called Prader-Willi Syndrome.
Prader-Willi Syndrome causes various health issues such as severe obesity, weak vision, and developmental delays.
Baqir’s family is heavily burdened by the costs of his medical care, as the syndrome has no cure and requires lifelong management.
The syndrome is caused by a genetic error in chromosome 15, leading to health problems from birth.
Images and a video of Baqir are shown, highlighting his kind personality and friendly nature despite his challenging condition.
Baqir suffers from a 75% intellectual disability, although this is not immediately evident in his behavior.
His family has been granted assistance, with a caregiver provided by his school, but the medical and financial burden remains significant.
The family is appealing to the Ministry of Labor and Social Affairs for financial support to manage Baqir’s ongoing medical expenses.
The program calls on the Ministry of Labor and Social Affairs to address Baqir's financial needs, particularly given the high costs of managing such complex health conditions.
Baqir’s condition has also caused him developmental delays, requiring his family to be vigilant, especially when he faces basic health issues like the flu.
A field report is shown, where the program visited Baqir’s home to document his condition and the struggles of his family.
Baqir has additional physical issues, including six toes on each foot, but maintains a positive outlook.
Despite his health challenges, Baqir is described as full of energy and positivity, welcoming visitors warmly and enjoying their company.
The segment ends with a heartfelt call to action, asking the audience to report similar cases in their communities to help raise awareness and support.
Transcripts
طبعا احنا نشكر اي شخص من الخيرين اللي
يراسلون البرنامج وصفحه البرنامج وخلونا
نطلع على بعض الحالات الموجوده بالمجتمع
اللي الناس ما تقدر تناشد او توصل فاحنا
نوصلهم ميدانيا عندنا طفل مسكين خطيه اي
والله خط اسمه باقر باقر عباس اي ايش قد
عمره تقريبا 11 سنه 11 وشويه اي باقر عنده
مرض هي متلازمه مو مرض اسمها براذ ويلي اي
فهذه طبعا شنو تغير شكل جس
تخلي مثلا مفرط السمنه النظر
ضعيف يعني اهله متبهدلين بصراحه متبهدلين
بسبب علاجاته والمشكله هذه الحالات وهذه
المتلازمات يعني ما بصعوبه يعني اصلا ما
يقدر يطيب ولا له شنو سببها ولاد يعني
وراثيه عفوا اي يعني بال هو جنين اكو خطا
بالكروموسوم وهيك الشغلات يعني فهذه ظل
مدى الحياه يعني موجوده طبعا اكو صور
للطفل باقر نقدر نشوفها هسه بفيديو نعم
نعم طيب هم ه دي
ناجد بقضيته ام يحتاجون مثل شيء معين من
اجل عرض هذه القضيه يا ريت نشوف صور خاصه
به اذا موجوده قبل نشوف التقرير شباب هم
طبعا اهله بشكل عام
ام اي نعم اهله بشكل عام هم يعني بصراحه
يعني مثقلين و شوف ه هذا هذا باقر هذا يا
عيني خطيه طبعا شخصيته جدا لطيفه طبعا
مبين فد لطيف وبين فد اريحي
ومرحب مرحب بالضيوف يا عيني طبعا ها
التقارير طبيه بده يقولون انكو تخلف عقلي
75% اكو تخلف عقلي عند تخلف عقلي اي اي هي
ها المتلازمات نعم ولا مبين عليه تدري اي
ولا مبين ما شاء الله خطيه و اكو 80 85%
طبعا اها معلمه فاعطوه اجازه حتى تكون
معينه لانه فعلا هو يحتاج الى شخص يعينه
بالبيت زين يعني ماشي امور بس هو مصرفه
متعب طبعا طبعا يعني هنا المشكله فلذلك
اهل ده يناشدون انه بلكي انه مثلا وزاره
العمل وشؤون الاجتماعيه هم طبعا رافعين
الكتاب بلكي خصصوا لفد راتب او دفعات يعني
طيب اذا ندعو وزاره العمل والشؤون
الاجتماعيه اللي هي هذه هي قضيتها هذه
قضيتها تحديدا ان تنظر الى معاناه هذا
الطفل واهله يحتاج الى مصرف اليوم اذا طفل
صار به فلونزا ايش قد تصرفوا له طيب مو
مثل هذه الامراض الصعبه جدا اللي يحتاج
لها مبالغ طائله فنتمنى ان تتابعون هذه
القضيه عندنا تقرير نشوف طبعا زرناهم
للبيت ميدانيا فسوي تقرير طيب راح نختم
بالتقرير فراس طبعا اكيد يلا بامكانك انت
الان ان تختم بهذا التقرير تمام طبعا بس
انه نوجه رساله للجمهور انه اذاك حالات
تشوفوها قريبه عندكم بس خلي يراسلنا
ويراسلون صفحه البرنامج حتى انه نتوجه لهم
ميدانيا ونزوره ونشوف شنو حالتهم نعرضها
على التلفزيون من خلال البرنام نا مع رفيف
الحافظ طيب هسه ننتقل الى شكرا الك فراس
شكرا لهذا الرصد المهم وهذا الرصد
الانساني اذا نشوف هذا التقرير الخاص بباق
وندعو دعوه حقيقيه
لمتابعه قضيته الانسانيه شكرا لكم التقيكم
باكر بحلقه جديده من برنامج مع رفيف
الحافظ واترككم مع التقرير الخاص ببقر
[موسيقى]
والله ماقر تشوف حالته حتى مرات ينام وهو
قاعد خلف الجدران تقبع قصص لا تخطر في
البال عائله سيد عباس تعاني سنوات وسنوات
بسبب حاله ابنهم باقر اهلكهم دون ذنب سوى
انه مصاب مذ ان كان جنينا بمتلازمه برادر
ويلي سندروم وهي اطراب جيني نادر يتم حذف
سبع جينات على الكروموسوم 15 اضطراب يضرب
توازن الجسم شهيه مفرطه ونهم وغالبا ما
ينتج عنها سمنه مرضيه وحالته كلش تعبانه
حتى قدام سكاين شي يعثر بيهن وما يشوفهن
يعثر بالطفل
يعثر جايين عليك
ايه يردون يشوفونك يريدون يشوفونك
ياتونك ها جاين عليك هذه المتلازمه هي
السبب الجني الاكثر شيوعا للسمنه المرضيه
عند الاطفال الى الان لا يوجد اجماع حول
سبب هذا العرض اضافه الى ان اصابعه سته في
قدميه دح يصيرون اصدقائك شو هوده يسلم
علينا ه يعني يجون يطلعونك يمشون يونك
تطلع تتمشى نروح نتمشى لا ما عند باخذ
اصدقاء تروح وياهم دا و با ايه انت تروح
وياهم انت تروح
وياهم اي تروح وياهم اج
الوزن المفرط اضطرابات النوم تاخر في سن
البلوغ مرونه مفرطه في الجسم وضعف العضلات
اضافه الى مشكلات سلوكيه في مرحله الطفوله
المبكره والى غياب التنسيق بين العينين
والبعض قد يولد بعينين بشكل
اللوز باقر طفل رغم وضعه الصحي الصعب
يتمتع بطاقه ايجابيه كبيره استقبلنا بكل
ود ومحبه واصر على لقائنا مره ثانيه وكما
دناك قادمون لك يا باقر الطيب يا جماعه
طبعا باقر يعني شوي حالته صعبه عنده
تقارير طبيه مشخصين الحاله بشكل مفصل باقر
شلونك عجبك تقول اخر
شيلا
وهلا على
راسي حبي اهلا وسهلا كنت معكم انا فراس
غضنفر من قناه اي نيوز برنامج مع رفيف
الحافظ ه
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