PARALYMPIC ATHLETE SUFFERING FROM SPINAL MUSCULAR ATROPHY (SMA)
Ahmad Nazmi or better known as Nami is a type 2 SMA patient (The symptoms of muscle weakness and floppiness (low tone/hypotonia) usually appear between 7 and 18 months of age), at birth he looked normal, despite his sister who inherited SMA disease from childhood. But after reaching the age of 7, his legs suddenly began to weaken. Every time he tried to walk and run Nami often fell. His mother began to worry about Nami's condition and continued to consult the hospital and see a specialist. After getting a referral from a specialist, the doctor confirmed that Nami has SMA Type 2, and since then Nami has been unable to walk and had to use a wheelchair. As a result, Nami's spine also became weaker and bent.
Furthermore, his illness will never be cured, and there is no medicine to treat him. Yet he needs meticulous daily care. Nami is a person who is passionate about fighting his illness, he strives in becoming an athlete in the sport he is interested in, mainly chess. Moreover, Nami is an athlete of paralympic Malaysia and once represented the country at the KL Paralympic Sea Games 2017. Now he is actively training for SUKMA. He said "why did I choose chess? for me this life is a game, we have to wisely plan our life strategy where we are headed. It trains my brain to stay active. For high school patients like me, it will slow down the process of my body weakening and increase my life expectancy ".
Treatment for high school is not available because it is permanent, high school life expectancy is also mostly short. But that does not mean Nami does not need it. Nami has the potential to go as far as a paralympic athlete, and that's why we want to realize his dream.
Nami now depends on an automatic hospital bed because the bed he uses now is already 20 years old and isn't functioning. Similarly, the hoist used to lift Nami, is broken and Nami needs a new hoist. In addition, Nami's weight has now reached 80kg, his father and mother are getting older and it is difficult to lift Nami and to make it easier for him to move to the hospital for follow-up treatment, Nami needs a car seat that helps him to get into the car. Then, Nami also needs daily disposable diapers. They all require a high cost.
We from Myheart in collaboration with MyFundAction, request your financial support and prayers to help Nami get through this situation with the best life and future.
Let's give a chance and a new breath to those in need out there by sharing some of your blessings.