The first video for Daniyal was 4 years back in 2018, now he looks healthier and we could not differentiate him from normal boy. He was undergone Enzyme Replacement Therapy ie Cerezyme via in vitro on bi weekly basis.
From this 2 video, we can see how a treatment can change a family.
In conjunction with World Rare Disease Day 2022 (28 Feb 2022), MLDA will be co-organising our pioneer RIDE with HOPE at Rembau together with Malaysian Rare Disorders Society (MRDS), Persatuan Sindrom Prader-Willi Malaysia (PWS) and Persatuan Berbasikal Negeri Sembilan to create the needed awareness pertaining rare diseases (RD) in Malaysia. The total proceed raised will be contributed support towards RD patients in Malaysia for them to have a higher chance of leading a quality life.
Bkt Miku, Rembau, best known as one of the steepest hill in Malaysia was selected as the event location which will definitely test the endurance level of both new and seasoned riders. We hope that by each pedal stroke, it will act as a reminder of our RD patients who are less fortunate, who are fighting for their lives and those who passed on. We are honoured to have YB Khairy Jamaluddin who had agreed to grace this meaningful event by riding alongside our participants on that day!
The event link for Ride With Hope Miku Challenge is https://cps4.me/miku-challenge. Come and join us!