Date: 12/06/2023, 10am
Case: DuoDuo (PCEye Eye Tracker & Laptop)
Allocation Amount: RM11,000
Case Needed Amount: RM11,000
Amount Before: RM349,940 (12/06/2023, 10am)
Balance After: RM338,940 (12/06/2023, 10am)
Because of Baby Reese, everyone learned about the rare genetic disorder SMA; also, because of Baby Reese, a 22-year-old girl from Johor who also suffers from SMA, contacted One Hope Charity and shared her experience in fighting against the disease over the years with us.
Duo Duo is a patient with Type 2 Spinal Muscular Atrophy (SMA Type-2). It may be that there is a lack of relevant information, or there is no medicine to treat it. Therefore, she can only rely on her willpower to fight SMA all these years.
Last December, One Hope Charity successfully raised RM9mil in seven days for Baby Reese Tan Ruixin to purchase medication for her gene therapy. Duo Duo, who is suffering from the same disease, was deeply moved, so she contacted One Hope Charity through our official Facebook page.
Duo Duo can write well. She wrote a brief self-introduction through Facebook private messages and later shared with us about herself, her family situation, background, and a detailed record of her experiences for the past 22 years in a 15-page article.
The following is the summary that One Hope Charity summarised from Duo Duo’s article:
Duo Duo was born in a small town in Johor. Her family did not notice any abnormal symptoms when she was born. When she was five months old, her mother found that her baby could not turn her body over, so she took Duo Duo to the hospital for consultation. At that time, the doctor failed to make any diagnosis. On a rare occasion, her parents met a doctor who was just returned to Malaysia from a foreign country. The doctor suspected that Duo Duo had SMA and suggested the parents let her undergo a genetic test. The test must be sent to the United States for testing, and the doctor confirmed that she had Type 2 Spinal Muscular Atrophy (SMA Type-2) when she was two years old.
It may be that there is a lack of relevant information, or there is no medicine to treat it, so all the family could do at that time was to accompany Duo Duo as much as possible.
When she was four, her body suddenly turned cyanotic. Her mother rushed her to the hospital and later referred her to Universiti Hospital in Kuala Lumpur for further treatment. Her condition finally stabilised after emergency rescue by the medical team, but at that time, her mother described that Duo Duo’s body was full of tubes. The hospital also assisted in applying a significant amount of allocation to purchase medical equipment, such as a ventilator for SMA patients, a phlegm suction machine, an oximeter, and a special wheelchair.
Duo Duo officially started her education in kindergarten at six. With a Universiti Hospital’s doctor letter confirming her intelligence level, she was enrolled in a four-year-old kindy class at six. There started her journey of seeking knowledge in a wheelchair. What impressed her the most was that her first teacher took the initiative to carry her to the toilet every day and provided extra classes to help her pick up in her studies, which established a solid cognitive foundation in her. Before she graduated from kindergarten, she had her first experience performing a song on the stage, which made her feel that going to school was a happy thing.
However, she faced new challenges when she entered primary school. She needed to support her right hand with her left hand when writing. Once, her schoolmates found that she was wearing diapers. They did not understand her condition and teased and laughed at her. When she was in Year Three, her condition started to deteriorate. She vomited black liquid several times and would be admitted to the hospital once or twice yearly. She has had difficulty swallowing food since Year Six.
Her body weight dropped when she was in secondary school. She vomited more often, had malnutrition, and her lungs had infections. She gradually became unable to swallow food, hold a mug, move her tongue, and do other movements. Those were all SMA’s complications; her body organs would fail gradually. However, the disease did not stop her from excelling in studies. She obtained 1A and 6B results in her SPM. She is grateful to her alma mater for all the conveniences given to her, especially for the encouragement to motivate her to become an inspirational speaker like Nick Vujicic.
And now, Duo Duo can only lie on one side on a reclining chair, relying on her parents to feed her milk once every three hours through a nasogastric tube. She can no longer care for herself. Tong Tong can only lie on a reclining chair, tilt her head to the side and use one finger to use her mobile phone to read the news, write diaries and memorise vocabulary.
In the private message, Duo Duo mentioned that she is worried that the only finger that can move now will gradually shrink. She will not be able to use a mobile phone to read and write by then. Therefore, she sincerely pleaded with One Hope Charity to sponsor her with an eye tracker so that she could operate a computer.
Duo Duo is a girl who enjoys reading. She used to use a computer to read books and articles but after the computer was worn out, because the family's finances didn't allow it, she didn't ask her parents to buy a new computer, so she had to watch the world on the 6.2-inch mobile phone screen.
"I'm also pleased with the book "Fate" that I was reading when I first knew about One Hope Charity. "No matter how bad the way of life is, it's still a way of life." This is the sentence that inspired me. I am also grateful to the god of luck for allowing me to witness many miracles and for allowing me to meet you via the Internet at the time. Thank you for not rejecting me when I was confused and looking for a way out in the future, and for also generously lending me a hand. " (Extracted from the third paragraph of the thank you letter on page 4)
The preceding is one of Duo Duo's words of thanks. Yes, Duo Duo and One Hope Charity met on the internet. Duo Duo initially gave One Hope Charity the impression that "this girl is very cheerful and motivated." From her private messages, every word and sentence, that she does not give up on herself because of SMA."
Duo Duo mentioned in a private message that in the future, even the only finger that can move will gradually shrink, and she will be unable to control the mobile phone to read, write, and so on. She hopes One Hope Charity will give her an eye tracker so she can control the computer with her eyes.
After getting to know her well, the foundation not only ordered an eye tracker for her, but also a new laptop computer and computer stand, so she can read and write on a large screen while also watching the outside world online. One Hope Charity allocated RM11,000 from the Emergency Medical Reserve Fund to to purchase the equipment listed above for Duo Duo.
"On a day when the weather was fine, I received hope from the One Hope Charity. This eye tracker, it allows me to take back the dominance of my life that has been taken away by SMA, and I can catch up with the life of normal people again. Thank you for everything you have prepared for me, allowing me to see new possibilities in the established ending. This eye tracker not only gave me a lot of strength to face the pain that I still have to face in life, it also greatly reduces the grief of loss. "(Extracted from the thank you letter - the second paragraph on page 1)
Duo Duo was overjoyed when she received the eye tracker. She even wrote an 8,000-word thank you letter in three days and drew an electronic thank you picture for everyone using the eye tracker.
Duo Duo will use this eye tracker and computer to ‘travel’ to her dream world. She is no longer limited to using her hands, but she can also do a lot with her eyes. She has already begun to plan activities for the coming years, believing that the dark days are over and that she is truly "seeing the light through the clouds" this time.
Duo Duo, who has been fighting SMA for over 20 years, also thanked Baby Reese's mother in the article. It was the latter who opened her eyes to her mother's greatness. She entered the SMA battlefield to protect her children and then fought against SMA. The word "mother" is perfectly interpreted. She also wished for Baby Reese to be able to run and live a healthy life as soon as possible. Of course, she would like to express her gratitude to her parents for their unwavering love, care, and protection over the past 22 years.
ONE HOPE CHARITY also blesses Duo Duo, who, despite the fact that SMA has taken away many of her body organs, has enough willpower and soul in this "battle with the host of fate" to face all of life's challenges and bravely pursue her ideals.
Duoduo's thank you letter is attached. Despite the length of the text, every sentence is filled with gratitude, as well as the hope of Duoduo's unending struggle and the extraordinary experience of life.
Let us all pray for Duo Duo, even if we've never met before, and hope she's safe.
Case: DuoDuo (PCEye Eye Tracker & Laptop)
Allocation Amount: RM11,000
Case Needed Amount: RM11,000
Amount Before: RM349,940 (12/06/2023, 10am)
Balance After: RM338,940 (12/06/2023, 10am)
Because of Baby Reese, everyone learned about the rare genetic disorder SMA; also, because of Baby Reese, a 22-year-old girl from Johor who also suffers from SMA, contacted One Hope Charity and shared her experience in fighting against the disease over the years with us.
Duo Duo is a patient with Type 2 Spinal Muscular Atrophy (SMA Type-2). It may be that there is a lack of relevant information, or there is no medicine to treat it. Therefore, she can only rely on her willpower to fight SMA all these years.
Last December, One Hope Charity successfully raised RM9mil in seven days for Baby Reese Tan Ruixin to purchase medication for her gene therapy. Duo Duo, who is suffering from the same disease, was deeply moved, so she contacted One Hope Charity through our official Facebook page.
Duo Duo can write well. She wrote a brief self-introduction through Facebook private messages and later shared with us about herself, her family situation, background, and a detailed record of her experiences for the past 22 years in a 15-page article.
The following is the summary that One Hope Charity summarised from Duo Duo’s article:
Duo Duo was born in a small town in Johor. Her family did not notice any abnormal symptoms when she was born. When she was five months old, her mother found that her baby could not turn her body over, so she took Duo Duo to the hospital for consultation. At that time, the doctor failed to make any diagnosis. On a rare occasion, her parents met a doctor who was just returned to Malaysia from a foreign country. The doctor suspected that Duo Duo had SMA and suggested the parents let her undergo a genetic test. The test must be sent to the United States for testing, and the doctor confirmed that she had Type 2 Spinal Muscular Atrophy (SMA Type-2) when she was two years old.
It may be that there is a lack of relevant information, or there is no medicine to treat it, so all the family could do at that time was to accompany Duo Duo as much as possible.
When she was four, her body suddenly turned cyanotic. Her mother rushed her to the hospital and later referred her to Universiti Hospital in Kuala Lumpur for further treatment. Her condition finally stabilised after emergency rescue by the medical team, but at that time, her mother described that Duo Duo’s body was full of tubes. The hospital also assisted in applying a significant amount of allocation to purchase medical equipment, such as a ventilator for SMA patients, a phlegm suction machine, an oximeter, and a special wheelchair.
Duo Duo officially started her education in kindergarten at six. With a Universiti Hospital’s doctor letter confirming her intelligence level, she was enrolled in a four-year-old kindy class at six. There started her journey of seeking knowledge in a wheelchair. What impressed her the most was that her first teacher took the initiative to carry her to the toilet every day and provided extra classes to help her pick up in her studies, which established a solid cognitive foundation in her. Before she graduated from kindergarten, she had her first experience performing a song on the stage, which made her feel that going to school was a happy thing.
However, she faced new challenges when she entered primary school. She needed to support her right hand with her left hand when writing. Once, her schoolmates found that she was wearing diapers. They did not understand her condition and teased and laughed at her. When she was in Year Three, her condition started to deteriorate. She vomited black liquid several times and would be admitted to the hospital once or twice yearly. She has had difficulty swallowing food since Year Six.
Her body weight dropped when she was in secondary school. She vomited more often, had malnutrition, and her lungs had infections. She gradually became unable to swallow food, hold a mug, move her tongue, and do other movements. Those were all SMA’s complications; her body organs would fail gradually. However, the disease did not stop her from excelling in studies. She obtained 1A and 6B results in her SPM. She is grateful to her alma mater for all the conveniences given to her, especially for the encouragement to motivate her to become an inspirational speaker like Nick Vujicic.
And now, Duo Duo can only lie on one side on a reclining chair, relying on her parents to feed her milk once every three hours through a nasogastric tube. She can no longer care for herself. Tong Tong can only lie on a reclining chair, tilt her head to the side and use one finger to use her mobile phone to read the news, write diaries and memorise vocabulary.
In the private message, Duo Duo mentioned that she is worried that the only finger that can move now will gradually shrink. She will not be able to use a mobile phone to read and write by then. Therefore, she sincerely pleaded with One Hope Charity to sponsor her with an eye tracker so that she could operate a computer.
Duo Duo is a girl who enjoys reading. She used to use a computer to read books and articles but after the computer was worn out, because the family's finances didn't allow it, she didn't ask her parents to buy a new computer, so she had to watch the world on the 6.2-inch mobile phone screen.
"I'm also pleased with the book "Fate" that I was reading when I first knew about One Hope Charity. "No matter how bad the way of life is, it's still a way of life." This is the sentence that inspired me. I am also grateful to the god of luck for allowing me to witness many miracles and for allowing me to meet you via the Internet at the time. Thank you for not rejecting me when I was confused and looking for a way out in the future, and for also generously lending me a hand. " (Extracted from the third paragraph of the thank you letter on page 4)
The preceding is one of Duo Duo's words of thanks. Yes, Duo Duo and One Hope Charity met on the internet. Duo Duo initially gave One Hope Charity the impression that "this girl is very cheerful and motivated." From her private messages, every word and sentence, that she does not give up on herself because of SMA."
Duo Duo mentioned in a private message that in the future, even the only finger that can move will gradually shrink, and she will be unable to control the mobile phone to read, write, and so on. She hopes One Hope Charity will give her an eye tracker so she can control the computer with her eyes.
After getting to know her well, the foundation not only ordered an eye tracker for her, but also a new laptop computer and computer stand, so she can read and write on a large screen while also watching the outside world online. One Hope Charity allocated RM11,000 from the Emergency Medical Reserve Fund to to purchase the equipment listed above for Duo Duo.
"On a day when the weather was fine, I received hope from the One Hope Charity. This eye tracker, it allows me to take back the dominance of my life that has been taken away by SMA, and I can catch up with the life of normal people again. Thank you for everything you have prepared for me, allowing me to see new possibilities in the established ending. This eye tracker not only gave me a lot of strength to face the pain that I still have to face in life, it also greatly reduces the grief of loss. "(Extracted from the thank you letter - the second paragraph on page 1)
Duo Duo was overjoyed when she received the eye tracker. She even wrote an 8,000-word thank you letter in three days and drew an electronic thank you picture for everyone using the eye tracker.
Duo Duo will use this eye tracker and computer to ‘travel’ to her dream world. She is no longer limited to using her hands, but she can also do a lot with her eyes. She has already begun to plan activities for the coming years, believing that the dark days are over and that she is truly "seeing the light through the clouds" this time.
Duo Duo, who has been fighting SMA for over 20 years, also thanked Baby Reese's mother in the article. It was the latter who opened her eyes to her mother's greatness. She entered the SMA battlefield to protect her children and then fought against SMA. The word "mother" is perfectly interpreted. She also wished for Baby Reese to be able to run and live a healthy life as soon as possible. Of course, she would like to express her gratitude to her parents for their unwavering love, care, and protection over the past 22 years.
ONE HOPE CHARITY also blesses Duo Duo, who, despite the fact that SMA has taken away many of her body organs, has enough willpower and soul in this "battle with the host of fate" to face all of life's challenges and bravely pursue her ideals.
Duoduo's thank you letter is attached. Despite the length of the text, every sentence is filled with gratitude, as well as the hope of Duoduo's unending struggle and the extraordinary experience of life.
Let us all pray for Duo Duo, even if we've never met before, and hope she's safe.
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Emergency Medical Reserve Fund
Emergency Medical Reserve Fund - Tan Jun Bin
Emergency Medical Reserve Fund – Lim An Hao
Emergency Medical Reserve Fund - Duo Duo
Emergency Medical Reserve Fund – Abdul Halim
Emergency Medical Reserve Fund – Choo Huey Ying
Emergency Medical Reserve Fund – Kumanan
Emergency Medical Reserve Fund – Nur Adni Arfa
Emergency Medical Reserve Fund - Omi Selamah
Emergency Medical Reserve Fund - Kew Chung Bee
Funeral & Burial Assistance - Ooi Khon
Emergency Medical Reserve Fund - Noor Suriyani
Emergency Medical Reserve Fund - Khoo Thiam Peck
Emergency Medical Reserve Fund - Hazwani
Emergency Medical Reserve Fund – Leong Kwan Yoong
