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Hi! my name is Tamimi Syawalludin Pohan, 14 years old. I am from Singapore. I was diagnosed with ‘Osteogenesis Imperfecta’ also known as Brittle Bone since born. I suffered from fracture multiple times since I was still in my mother womb till these days. More then 70 fractures. I'm now in Secondary 1, in a mainstream Secondary School.
I suffered fractures on my spinal bones, both upper and lower arms, both upper and lower legs bones. I moves by gliding around the house using my hands and upper torso for my legs bone are too fragile. Walking will fracture more bones. My legs fracture more often hence I undergo recurrence operation to insert metal rod to straightened as well as strengthens my legs, 6 years agoThe metal rod will grow with me until a certain period, before the rod is replaced by a new metal rod until it stops growing.
I'm known to KK Children's Hospital Singapore and frequently visit for a regular follow-up checkup. I'm seeing quite a number of Doctors once every 1 or 2 months on a regular basis. Apart from that I has to be hospitalised once every 3 months for a medication called “Pemidronic” which is given on drip sinces I was 7th old. This year doctor had changed new medication called "Zerodronic", once every 6 months, which is also given on drip, it started last admission 3 months again. On top of that I has to take Calcium, Vitamin and Iron. The cost of the medication is expensive.
I needs to be carried / transferred from one place to another. Although I'm unable to stand and walk on my own, I'm bright and active boy who enjoys school and friends company. I'm very determined and wants to be independent to be able to do things on my own daily needs. Very careful, I move around the house by sitting on the floor using my hands without the help of others. The same when sitting on a wheelchair, I moves around freely. I'm very a lovely, caring, understanding and a loving boy. I enjoy drawing animation and my dream to be an artist. Above is my drawing.
Unlike before, I still traumatised and was so afraid of breaking more bones after the last episode, the Femur fracture in 2016.
Both of my parents are working full time. We have a domestic helper who cares for me during my parents absence. She has been with us for almost 10 years now, taking care of my needs and necessities. She accompanies me to school and always on standby around the school area while I in the class.
I travels to school every day by normal taxi partially subsidised by “Singapore(SG) Enable”. We pay the fare in full by EZlink for every single trip which means we have to pre top up the EZlink card. SG Enable will only reimburse by the end of the following month with certain percentage given. Booking fee and ERP charges are not covered under subsidies so we hail a cab by the roadside to save costs. It’s never easy to get a cab in the morning especially on a rainy day. Unfortunately, I has to skip school when it’s raining. Some cab would just pass me by when they see my disabled, sitting on a wheelchair. But I must say there are also many kind hearted drivers who would take us, help carry the wheelchair to bonnet while my helper carry me into the cab.
In July 2017, I had “Lumber Spine” fracture. Since then I complains of frequent back pain. I'm unable to sit or lying on the bed without crying in pain. My parents rushed me to KK Children's Hospital many times for X-Rays. Unfortunately, the doctors are unable to do anything about it. They suggest I wears a corset and minimise movements. I was given painkillers for the pain and was advised to rest in bed whenever I experience any pain. We were told be prepared of the worst as my lumber spine bone may collapse due to my condition. Until now I unable to stand my on.
To avoid my condition from getting worst, I need to sit on wheelchair transport accessible which is costly. The only lowest source of transportation we can find is "London Cab".
This way, there will be less of handling and / or carrying me to transfer from one place to another. Our utmost fear and concern is my safety.
I had been absent from Primary school since 2016 due to my Femur Fracture prior to The Lumber Spine Fracture in 2017. Traveling on a London Cab is very costly. The estimated fare per month is $1,600, for 2 trips per day to and fro home and school and back again. We need to have at least $3,200 for 2 months prior to the reimbursement from SG Enable based on the percentage given to me.
Due to my hard work I manage to complete my final examination "PSLE" and manage to get into Secondary school with good marks.
I go to mainstream school and only has a manual wheelchair. My parents had countlessly appealed to various places, government agencies as well as non-profitable agencies but was unsuccessful. My parents combined income was the main reason. We struggle, going around since I was in Primary 1 till today. Another factor is, we are middle income family and due to that, help is very limited for us.
Having special needs and chronic illness family members costs us more than what my parents earning monthly and is difficult to make our ends meet.
Apart from me, Brittle Bone boy, my parents are also caring for my grandmother aged 84, who is suffering from Dementia and Glaucoma. My sister is suffering from Epilepsy and also both of my parents too are suffering from a chronic disease. Everyone of us in the family has follow up check-up on a regular basis in Singapore govt hospitals / clinic. Singapore living standard is very high and very expensive, everything need to be paid. Daily expenses and bills need to be paid. On top of that they need to buy diapers for me and my grandmother. To raise a kid with chronic illnesses and disabilities like me and dementia mother is a big challenge for my parents.
Nobody wants to be born physically disabled, neither do me. I needs love and support from my family and the society to move on with my life, be independent, to have a bright future, dream to be an artist come true and live like a normal person and have a family.
My mum is currently working full time and besides taking care of me, a special needs child, she also has a mother to take care whom suffers from dementia. This is very taxing and stressful for my mother. Furthermore there is NO organization or support in Singapore for sufferers of Brittle Bone (Osteognensis Imperfecta). To lighten up my parents burden, hence I am asking for the public’s kindness and support to raise funds to pay for my transportation to school on London Cab.
And may my dream come true one day.
On behalf of my family and myself, from the bottom of my heart, thank you so much for your kind generosity in helping me. May God repays your kindness with many happy returns. God bless you.