Help Rahat win over a rare disease
Organized by: Ashequr Rahman
This is a story of early life journey of a heoric boy battling against a rare disorder despite all odds. It is inspiring, heart warming but also reminding us the hard fact its an enormous financial strain for his family to move on, on their own. This is where you, the Angels, can help, who has the power to change his live, help him walk and run on his own two feet.
Rahat was born in a medically disadvantaged country in 2002 bringing joys to his blessed parents. But, after a brief period, seeing their boy's unusual skin condition, continous crying and regular hospitalisations they understood something was not right - and eventually their dreams shattered and joys faded into tears. Unknown to them at that time that he was born with a rare genetic disorder called NOMID affecting his central nervous systems and resulting in chronic pain in both knees, gradual loss of hearing eye sight and leg movement, terrible seizures, stunt growth, Osteoporosis among other damages to his vital organs.
He was properly diagnosed 2 and half years later after his parents decided to get him admitted in a Singapore hospital. His parents were told that he may never be able to walk and eventually may loose his eye sight and hearing. Three years later a medication was made available in Singapore called Keneret which acted on Rahat miracle. His seizures, rash and sudden fever flare ups and chronic inflammation stopped within 7 days after the initial dosage. Encouraged by this, the family decided to take up the CHALLENGE and relocate to Singapore despite rising living costs, non-availability of insurance coverage, higher school fees in the special education in SIngapore and on top of that the expensive medicatoin in injections form needs to be taken every day. The 28 vials of injections cost about USD 2,800. To cope up, the parents sold off their house back in the home country and the mother refusing to give up took up a job in the same school Rahat was admitted into- after completing a Diploma in Special Needs Education.
Its been six years since then that Rahat is on that medication without which he presently cannot continue his daily life. NOMID has already affected his bones, so he cannot walk and his knees are fused, Despite this, the brave boy is showing increasing interest to walk - very inspiring to the family. His parents are now trying to bring him to NIH in the USA where he may have to under go a knee surgery.and get him enrolled in a program run by the manufacturer of Keneret for compassionate use which will greatly reduce the financial burden. But this process may take upto one year to sort out and the parents have almost depleted all of their savings and available funds.
The donation amount sought is to cover the cost of medications for 12 months and the cost of travelling, accomodation and possible unforseen medical expenses at NIH, USA.
Rahat is really sweet boy, lights up a room with his smile and warmth. Hug him and support his cause by donating in whatever form you can. Even if you cannot make any donations, I will be really grateful if you can spread the words.