Video of Mr Ee on youtube:
守护渐冻人的心愿 – 我要活下去 (I want to live on)
He is doing his research on ALS and hope in the future to do a cell stem treatment which required him to fly to USA or Israel for stemcell treatment from Company name Brianstrom using Nurown technology which will be approved by FDA USA next year.
Mr Ee Hun Chong age 47 is a family man with a loving wife and 2 lovly kids, one Girl age 9 and boy age 6.
It was all going fine till around 2012 that his left thumb start to feel numb and as time go by it is getting worse and it slowly spread to the hand and arm and the whole left shoulder and it didn't stop there, as slowly the affected his right hand too. It start to affect his legs and a few time Mr Ee legs give way and he just fell down and slam his face to the ground causing injuries to his face.
Mr Ee had been working hard for his family and continue to work as long as he can even when his condition is getting worse until his body do not allow him to work anymore.
Mr Ee Hun Chong was diagnosed with ALS (Amyotrophic lateral sclerosis) in 2014. Amyotrophic lateral sclerosis is a type of motor neuron duisease. It refers to a group of progressive, neurological diseases that cause dysfunction in the nerves that control muscle movement.Most people with ALS will die after 3 to 5 years from first experiencing symptoms . Most people with ALS die of respiratory failure or pneumonia.
It was a big blow to him and his family but Mr Ee didn't give up, he did all research on this ALS diesease and try to find way to keep himself alive. His greatest wish is he hoping for is to stay alive as long as possible so as able see his children growing up.
Mr Ee and his family current stay in a rental 2 room flat under the subsidary scheme. He is current under MSF and other non profitable organisation assistant like Tzu Chi foundation for his medical and physio treatment.
He is doing execerise with the help of the caregiver everyday so as to keep his body in best condition. Mr Ee can only communicate using his tablet with the help of a eye detection software and his feet(minimum motion) , he is not able to speak as his throat muscle and the rest of his body muscles is deteriorating. His daily activities is fully depended on a caregiver.
There is no cure for ALS as for now, but there is medication called Radicava(from Japan) recently being approved not based on extending survival, but it help made patients' symptoms deteriorate more slowly but it is a expensive treatment which cost nearly to $50,000 treatment not including hospitalized bill.
Mr Ee is the first patient to start the Radicave treatment in Singapore. Regardless of the side effects he determine to try it.
Mr Ee is a fighter and despite his current condition, he is fighting and working hard to maintain his health and stay alive for his loves one. He is doing exercise everyday with the help of the caregiver to maintain his physical form as much in shape as possible.
Mr Ee is hoping to raise $ 350, 000 for his treatment so as to stay alive and be able to be there for his children as they grow up.
He is doing all he can for his family.
Your donation will help to make a great difference to Mr Ee and his family especially his children.
We will like to Thanks all that will be contributing to the fund raising for Mr Ee .