Having read today’s article in The Star on the subject, I am compelled to offer my family’s story. It is my earnest hope that through sharing this , parents or parents to be are enlighten and focus their attention on the seriousness of such abnormality , unfortunate it may be.
You see , way in 1990, my son was born with “normal” physical attributes, with the exception of a “little bump”on one side of his buttocks. Though , my wife and I were a concerned on his condition, nevertheless, there was nothing abnormal in all his behaviour such as eating, passing motion, etc,… However, not satisfied with the paediatrician’s explanation that the “bump” is baby fat, we sought the advise of a specialist in a private hospital. This so called specialist was also of the opinion that it was “baby fat” and it would “go away” when he grows to a year or two.
We did not pay much attention to his “condition”as everything was normal…. not until he was about 12 years old….suddenly, it dawned on us that my son’s gait was not so “normal” after all.
On closer examination, we discovered to our horror, that his left leg was “thinner” than the right leg ( from the thigh down to the foot).
Following subsequent hospital examinations, scans, x-rays, etc, we were told my son’s spina bifida has manifested itself fully. It needs to be corrected to allow him to experience a better quality of life.
The operation was expected to be risky but we were assured that the Dr will do all he could. This kind Dr Richard Veerapan (Neourosurgery at Sunway Hospital) did a good job and my son’s bump was “cleaned” up … there is only a minor swelling… which is not that evident….Dr Richard Veerapan subsequently migrated to Canada and joined the University of Columbia ( as I was told).
My son has now graduated with a Degree in Hospitality and is now working in CHINA….. So the moral of my story , is as parents , we ought to pay much more attention to the features of our growing children so that we can “catch” all these genetic malformations.
Dear Mr Mong. Thank you for sharing your story. Dr Richard Veerapen is the best. I wouldn’t have studied science had he not written in my hospital folder that i am “Very Intelligent”. I thought very poorly of my academic abilities when i was young. There are many parts to neural tube defects which still require substantial research. Closed neural tube defects, like what i have, born with skin covering is poorly studied.
Assalamualaikum Dr Noraishah. I read your story in the Sunday Star dated 16 February 2014. Your story inspires me. I hope parents with disabled children see that their children can live normal lives with their love and support. What you experienced as a child is still happening still. However, maybe the situation has improved a little.
Now we have the Pusat Pemulihan Dalam Komuniti in each state legislative’s area where parents could send their children for 4 hours a day and for 4 days a week at the centre. They are taught basic living skills and they accommodate children with different types of disability such as autism, downs syndrom, muscular dystropy, etc. I admit there are limitations to providing customised training to the children with lack of knowledge and skills in disability education.
As the new chairman of a PDK centre in Senggarang . Batu Pahat, I hope to make a difference in the children’ s lives by providing information and support to their parents to ensure a better future for their children. I feel that parents are not convinced that their children should receive higher education and be part of society. They think that sending their children to the centre is enough. They are not willing to send their children to special schools and allow them to develop and create their own opportunities.
I wish they could meet you. What your parents did for you can open their eyes as to what they can do for their children.
I pray that Allah will bless you with good health and happiness. If there is an opportunity and you are free I would like to invite you to give a talk to the parents n community here, in future.
Wassalam
Mahani Mahadzir
Chairman, Pusat Pemulihan Dalam Komuniti
Dewan Undangan Negeri Kawasan Senggarang, Batu Pahat, Johor.
Having read today’s article in The Star on the subject, I am compelled to offer my family’s story. It is my earnest hope that through sharing this , parents or parents to be are enlighten and focus their attention on the seriousness of such abnormality , unfortunate it may be.
You see , way in 1990, my son was born with “normal” physical attributes, with the exception of a “little bump”on one side of his buttocks. Though , my wife and I were a concerned on his condition, nevertheless, there was nothing abnormal in all his behaviour such as eating, passing motion, etc,… However, not satisfied with the paediatrician’s explanation that the “bump” is baby fat, we sought the advise of a specialist in a private hospital. This so called specialist was also of the opinion that it was “baby fat” and it would “go away” when he grows to a year or two.
We did not pay much attention to his “condition”as everything was normal…. not until he was about 12 years old….suddenly, it dawned on us that my son’s gait was not so “normal” after all.
On closer examination, we discovered to our horror, that his left leg was “thinner” than the right leg ( from the thigh down to the foot).
Following subsequent hospital examinations, scans, x-rays, etc, we were told my son’s spina bifida has manifested itself fully. It needs to be corrected to allow him to experience a better quality of life.
The operation was expected to be risky but we were assured that the Dr will do all he could. This kind Dr Richard Veerapan (Neourosurgery at Sunway Hospital) did a good job and my son’s bump was “cleaned” up … there is only a minor swelling… which is not that evident….Dr Richard Veerapan subsequently migrated to Canada and joined the University of Columbia ( as I was told).
My son has now graduated with a Degree in Hospitality and is now working in CHINA….. So the moral of my story , is as parents , we ought to pay much more attention to the features of our growing children so that we can “catch” all these genetic malformations.
Mong Sum Thye
Dear Mr Mong. Thank you for sharing your story. Dr Richard Veerapen is the best. I wouldn’t have studied science had he not written in my hospital folder that i am “Very Intelligent”. I thought very poorly of my academic abilities when i was young. There are many parts to neural tube defects which still require substantial research. Closed neural tube defects, like what i have, born with skin covering is poorly studied.
- Aishah
Assalamualaikum Dr Noraishah. I read your story in the Sunday Star dated 16 February 2014. Your story inspires me. I hope parents with disabled children see that their children can live normal lives with their love and support. What you experienced as a child is still happening still. However, maybe the situation has improved a little.
Now we have the Pusat Pemulihan Dalam Komuniti in each state legislative’s area where parents could send their children for 4 hours a day and for 4 days a week at the centre. They are taught basic living skills and they accommodate children with different types of disability such as autism, downs syndrom, muscular dystropy, etc. I admit there are limitations to providing customised training to the children with lack of knowledge and skills in disability education.
As the new chairman of a PDK centre in Senggarang . Batu Pahat, I hope to make a difference in the children’ s lives by providing information and support to their parents to ensure a better future for their children. I feel that parents are not convinced that their children should receive higher education and be part of society. They think that sending their children to the centre is enough. They are not willing to send their children to special schools and allow them to develop and create their own opportunities.
I wish they could meet you. What your parents did for you can open their eyes as to what they can do for their children.
I pray that Allah will bless you with good health and happiness. If there is an opportunity and you are free I would like to invite you to give a talk to the parents n community here, in future.
Wassalam
Mahani Mahadzir
Chairman, Pusat Pemulihan Dalam Komuniti
Dewan Undangan Negeri Kawasan Senggarang, Batu Pahat, Johor.
Dear Puan Mahani, please phone me at 017-2604310. I will be happy to meet you.
Aishah