SG$2,362.00Donated So Far
A friend of mine named Tamimi Pohan, was born with a rare disease known as "Osteogenesis Imperfecta", type 4. Also known as brittle bone. He suffered multiple fractures since birth. His first fracture was when he was in his mother's womb. To date he suffered a total of more than 70 fractures. He is now in Secondary 3 studying in a mainstream school.
Suffering From A Permanent Rare Disease Called Brittle Bone Disease
He suffered fractures on his spinal bones, both lower and upper arms, lower and upper legs, bones, and collarbone. Unlike before, he is still traumatised and he is so afraid of breaking more bones after the last episode when his "femur" and spine fractured in 2016.
Tamimi is unable to stand on his own. Standing up will fracture more bones. His legs experienced fracture more often and that is the reason why he needs to undergo recurrence operation just to insert a metal rod in order to straighten as well as strengthen his leg position a few years ago. The metal rod will grow with him until a certain period of time as there is a need to replace the current metal rod until he stops growing.
He needs to be carried / transferred from one place to another using a transferring board by himself or with his father's help to carry him. Although he is unable to stand and walk on his own. He is a bright and active boy who enjoys his life like other teenagers. He loves drawing.
He is a very determined individual and he also wants to be independent so that he is able to see to his own daily needs by himself. Tamimi moves around freely in a wheelchair but any sort of movement can aggravate his back pain. Tamimi is a lively, caring, understanding and loving person.
He is currently seeing a few doctors at KKH once every 3 or 4 months on a regular follow-up check-up. Apart from that he has to be hospitalized every 6 months for a medication called "Zoledronic'' which was given to him on drip.
Family Has Chronic Illness
Everyone in his family has a chronic illness. His father was diagnosed with heart problems and follow-up at NUH.
Due to Covid19, he was retrenched without any compensation in 2020.
His mother was diagnosed with diabetes, depression and anxiety. She was also diagnosed with "Lumbar Spine" since 2020, and followed-up at KKH and NUH. She was given "Lumbar Spinal Stenosis" injection 4 times in 2020. She underwent twice operation in 2021. The first operation in January and the second in July the same year. Her post operation recovery is very slow. She may still require the intervention. She may need to get another "Stenosis" injection. Her mobility is slow and unstable. Due to her condition she was terminated last December 2021.
His sister was diagnosed with epilepsy since she was 12 years old. And follow up at NUH.
Apart from that, his parents taking care of his elderly grandmother who was diagnosed with dementia, glaucoma, earing lost and stage 4 breast cancer.
Started Facebook Live To Sell Stuffs(Ranging from foods to others)
Tamimi started facebook live during covid-19, when his father got fired from his job due to lack of orders. They first started by selling second hand story books, stationary and toys of their own.
Slowly he started to sell brand new electronic items. And return electronic from Amazon. But ever since people are able to go out and shop in public there is no more demand for electronics goods. This results in losing money to the suppliers and the rest of the supplies at home had to be let go for a cheaper price and could not make a profit.
Currently they are selling home based cooked food, snacks and frozen foods that are prepared by them. And some are from suppliers.
Selling food on home based differs from selling in the store. You will not see your customer personally. Customer expectations are very high. The food that they cook needs to be clear on the same day. The price has to be cheap. Some customers are good but some are nasty. The starting time of selling has to be the same every day.
When their food is unable to be sold off and lots of balance, they have to let it go and start to sell in bundles. Bundles are like a set meal but the prices are even cheaper. This is where they start to lose profit. Sometimes they have to give away the food. There are customers who ordered the food but didn't give their address, after their "Live" off. Some customers never make their payment after receiving their food. They were block and become uncontactable. This does not happen once but few times.
Standard of living is really expensive.Daily expenses and bills need to be paid.
Getting help is not easy for a middle income like Tamimi family. His parents has to purchase diapers and wet tissue for Tamimi and his grandmother.
I also want to raise funds to renovate tamimi's kitchen and toilet so that it is wheelchair friendly and tamimi can access the kitchen and toilet without his parents help.
Hence I appeal for the public’s help to raise funds to help Tamimi and his family.
On behalf of Tamimi and his family, from the bottom of my heart, thank you for your kind generosity. May God (Allah) repay your kindness with many happy returns.
Tamimi will help his father doing admin job after finish his school.
You can help to support Tamimi and his family by buying their food at "POTATO SHOP" facebook live page at 330pm or 4pm everyday.
- Sarina Siregar