A 15 years old boy name Tamimi Pohan, was born into a family of five. he was diagnosed with a genetic disorder of the bones, scientifically “Osteogenesis Imperfecta” also known as "Brittle Bone". He suffered multiple fractures since birth. His first fracture was when he was in my womb until today. A total of more than 70 times. He is now in Secondary 2 studying in Normal Academic mainstream School.
He had suffered fractures on his spinal bones, both lower and upper arms and also lower and upper legs bones, and collarbone. Unlike before, he still traumatized and he is so afraid of breaking more bones after the last episode, his "femur" fracture in 2016 and also spine fracture. Tamimi is unable to stand on his own. Standing up will fracture more bones. His legs experienced fracture more often and that’s the reason why he needs to undergo recurrence operation just to insert the metal rod in order to straightened as well as strengthens his legs position few years ago. The metal rod will grow with him until a certain period of time as there's a need to replace the current metal rod until he stops growing.
He needs to be carried / transferred from one place to another. His home is a center stage for leisure activities due to limited mobility and lack of access to transport. Manga, mobile games and drawing aside, it is critical that school continues to be a part of Tamimi’s routine. It is here that he can exercise social skills, friendships, language and inclusivity. Although he's unable to stand and walk on his own, he is a bright and active boy who enjoys going to school and enjoy being in his friends company. He is a very determined individual and also wants to be independent. So that he is able to do his own daily needs by himself. Tamimi is lovely, understanding, caring and loving. Sitting on wheelchair Tamimi is able to moves around freely.
He's a well-known in KKH after frequently visits to the doctor there for a regular follow-up check-up. He is currently seeing quite a few doctors once every 3 or 4 months on a regular basis. Apart from that he has to be hospitalized once every 3 months for a medication called "Paimedronic which was given in drip since he's 7 months old until last year 2019. Now the doctor had changed medication called "Zoledronic" which will be given for every 6 months, on drip.
To prevent Tamimi's condition from getting worst with more fractures, he had to be ferried to and from school by "London Cab Wheelchair" accessible since 2018. This way, there will be less of handling or carrying of him to transfer from one place to another. Our utmost fear and concern about his safety. Traveling on a London Cab is very costly. The estimated fare per day is $80 ( $40, per trip + 30 cents per transaction). Even with SG-Enable subsidies we still need to paid a lot.
Recently, Tamimi had been complaining his left knee pain when moving. So we take him to hospital and do x-tray. We found out that his metal rod in his left knee shifting away from alignment. Doctor advised to do operation, replaces new metal rod. The costs of the new metal rod estimated about $10K, excluding other charges like medical, surgery costs etc.
Due to Coronavirus, the operation will be postpone. At the meantime Tamimi need to minimize his movement to less the pain.
My hubby and I are full time working parents. We have a domestic helper whom has been taking care of Tamimi's needs and necessities when we are not around. She has been with us for almost 11 years plus. She accompanies Tamimi to school whenever there is CCA or any extra lessons. She is not only a helper to Tamimi but is also a big sister to him. They always spend time together and share in everything. She is like a member of our family.
At the same time, my helper also takes care of my mother who is 86 years old. She was diagnosed with glaucoma and dementia few years back. In last year, October 2019, my mother was diagnosed with stage 4 breast cancer.
Apart from my poor Brittle Bone boy, we are also cares for my daughter who is suffering from Epilepsy. Both me and my husband are suffering from a chronic disease. Everyone of us has follow up check-up on a regular basis in Singapore govt hospitals or clinic. Singapore living standard is super high and super expensive. Daily expenses and bills need to be paid. Being a working mother and caregiver for a special need children’s and a dementia mother is very taxing, stressful and challenge for all of us in the family.
Furthermore there is NO Organization or support group for “Osteogenesis Imperfecta” in Singapore. Hence I am asking for the public’s kindness to raise funds for my son, Tamimi Pohan "Back To School - London Cab" fare and his Surgery. Please help Tamimi go to school likes others student. It brings joys and smile to Tamimi’s. I know that Tamimi can study and he is a talented artiste that’s why we put up this fundraising page.
Tamimi had been absent from school since mid-January 2020 until now, this article written.
Difficulties That We Are Going Through
-- When Tamimi was in Primary School, he was often bullied for his differences and difficulty that he go through. He face lots of bad experience which he still remember until now.
- Tamimi attends more often Secondary School and has a better support system in school through friends and teachers. In addition to the standard subjects, Tamimi is learning food and consumer education upon being chosen to do so by his school.
- I had countlessly appealed (begging) to various places, MOE, government agencies as well as non-profitable agencies to get funds paying for Tamimi "Transportation to School". Their reason is the same, our combine income, "Gross Salary" is more then their minimum criteria. Secondly, he go to mainstream school that is why his not eligible and help is limited.
Having special needs and chronic illness family members costs us more than what we are earning monthly, with neat salary, is difficult for us to make our ends meet.
Nobody wants to be born physically disabled, neither do Tamimi. He needs love and support from his family and the society to move on with his life, be independent and to have a bright future like a normal person.
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 and his Surgery. Please help Tamimi go to school likes others student. Please bring joys and smile to Tamimi’s face again. I know that my son, Tamimi can study and is a talented artiste.
Tamimi had been absent from school since mid-January 2020 until now, this article written due to shortage funds. On behalf of my family, from the bottom of my heart, thank you so much for your kind generosity. May God repays your kindness with many happy return.
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