Meet Joel, a 21-year-old Malaysian with MPS II, who rises above the challenges against all odds

Joel was diagnosed with a rare disease, MPS II, at the age of 5, after his father noticed a wheezing sound from his heart and often falling sick. His father recalled feeling at a loss and not knowing what to do. Giving up on his own child at the time was simply not an option, as Joel would not be able to face the challenges ahead all alone. As Joel grew older, he was devastated and found it difficult to accept his condition. Movements that were considered simple and easy for others such as straightening and raising arms, or squatting proved to be a challenge for him. Even holding a pen was difficult which made schoolwork an uphill task.

His father has been diligently driving back and forth from Pontian to Kuala Lumpur Hospital every week for his treatment. Joel is always tired from the long journeys, it is 7 hours’ drive with 640 km per trip, but he continues to attend his treatments faithfully.

Joel hopes that he can continue to work and reach his full potential. Moreover, he hopes for other people to be inspired from his life as he rose above the challenges against all odds. He thanks his father’s presence, love and support for him during his 10 years of treatment.

We hope Joel’s story will serve as a reminder for all of us to hope and fight through the challenges. Together we can help raise awareness of the symptoms of MPS diseases to help individuals like Joel.

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