I’m a mother of a 13 years old boy named Tamimi Syawalludin Pohan. He was diagnosed with ‘Osteogenesis Imperfecta’ also known as Brittle Bone since he was born. He sufferred from fracture multiple times since he was still in my womb till these days. He is now in Primary 6 in a mainstream Primary School and is sitting for his PSLE (Primary School Leaving Examination). He suffered fractures on his spinal bones, both arms, both upper and lower legs bones. He moves by gliding around the house using his hands and upper torso for his legs bone are too fragile. Walking will fracture more bones. His legs fracture more often hence he undergo recurrence operation to insert metal rod to straightened as well as strengthens his legs. The metal rod will grow with him until a certain period, before the rod is replaced by a new metal rod until he stops growing. He is known to KKH and frequently visit for a regular follow-up checkup. He is seeing quite a few Doctors once every 1 or 2 months on a regular basis. Apart from that he has to be hospitalised once every 4 months for a medication called “Pamidronic” which is given on drip.
Tamimi needs to be carried / transferred from one place to another. Although he is unable to stand and walk on his own, he is a bright and active boy who enjoys school and friends company. He is very determined and wants to be independent to be able to do his daily needs. Very careful, he will move around the house by sitting on the floor using his hands without the help of others. The same when sitting on a wheelchair, he moves around freely. He is a lovely, caring, understanding and a loving boy.
Unlike before, he is still traumatised and is so afraid of breaking more bones after the last episode -the Femur fracture in 2016.
My husband and I are working fulltime. We have a domestic helper who cares for Tamimi during our absence. She has been with us for almost 9 years now, taking care of his needs and necessities. She accompanies Tamimi to school and always on standby around the school area while he is at class.
Tamimi travels to school every day by normal taxi partially subsidised by “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. 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, Tamimi has to skip school when it’s raining. Some cab would just pass him by when they see my disabled boy 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 we carry Tamimi into the cab.
In July last year 2017, Tamimi had “Lumber Spine” fracture. Since then he complains of frequent back pain. He is unable to sit or lying on the bed without crying in pain. We rushed him to KK Hospital many times for X-Rays. Unfortunately, the doctors are unable to do anything at this moment. They suggest he wears a corset and minimise movements. He was given painkillers for the pain and was advised to rest in bed whenever he experience any pain. We were told be prepared of the worst as his lumber spine bone would collapse due to his condition.
To avoid his condition from getting worst, The Doctors suggested Tamimi be ferried to and fro school by London Cab. This way, there will be less of handling and/or carrying him to transfer from one place to another. Our utmost fear and concern is his safety.
Tamimi had been absent from school since 2016 due to his 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.
Tamimi goes to mainstream school and he only has a manual wheelchair. I had countlessly appealed to various places, government agencies as well as non-profitable agencies but was unsuccessful. Our combined income was the main reason. We struggle, going around since he was in P1 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 we are earning monthly and is difficult to make our ends meet.
Apart from my poor Brittle Bone boy, we are also caring for my mother aged 84, who is suffering from Dementia Glaucoma, my daughter is suffering from Epilepsy also both my husband & I too are suffering from a chronic disease. Everyone of us has follow up check-up on a regular basis in Singapore govt hospitals / clinic. Singapore living standard is high and very expensive. Daily expenses and bills need to be paid. To raise a kid with chronic illnesses and disabilities like Tamimi is big challenge for us.
Nobody wants to be born physically disabled, neither do Tamimi. He needs love and support from family and the society to move on with his life, be independent and to have a bright future like a normal person.
As a working mother and caregiver with special needs and a dementia mother is very taxing and stressful for me. Furthermore there is NO organization or support in Singapore for Brittle Bone. Hence I am asking for the public’s kindness to raise funds to pay for my son, Tamimi Pohan Back To School - London Cab fare. Please help Tamimi go to school and sit for his PSLE. Please bring smile to Tamimi’s face again.
On behalf of my family, from the bottom of my heart, thank you for your kind generosity. May God repays your kindness with many happy returns. God bless.
When do you need to raise the fund by?
How will the fund be used?
Funds will pay for Tamimi's London Cab transport to and fro home and school and back again and his daily needs.
Video created by Tamimi to say Thank you to all doners. Happy watching...😊💝
Tamimi is back to school traveling with the London Cab. Thanks to the doners for all the helped. Please watch the videao created by Tamimi to say thank you to all doners, enjoy watching...😊💖
You won't be charged yet.
Your little help means a lot to us. I thank you for your help from the bottom of my heart.
Thank you so much to all who had donated, my transportation to school this few months. I had done my PSLE and I had received result on 22 November 2018. I'm eligible to go Secondary school, "Normal Academic". I really hope there are kind donater who willing to help and support me for my transportation to Secondary school for next year 2019.
The donation money that we received is not only pay for my transportation but pay for my tuition and buy adults diapers. Once again, thank you all and please pray for my Success and Support. 😊😊 :D
Ruhaifi Karamah Bajrai has donated SGD 504 days ago
You won't be charged yet.