-from my column No reason not to be joyful:
"Kenneth, 12 [he's now 13], is suffering from Morquio syndrome. It is a metabolic disorder wherein he inherited defective genes from his parents. He manifests abnormal development of bones including a bell-shaped chest with ribs flared out at the bottom, coarse facial features, large head, widely spaced teeth, loss of nerve functions below the neck, etc. He is hooked to a ventilator 24/7 for almost a decade now. Yet, Kenneth always wears a bright smile despite the difficulties. He excels in solving math problems and creates his own artworks. I always remember our second meeting during my gift-giving at PGH. Kenneth handed me a letter that he personally wrote and I was so touched! Even though he is in a difficult pain, he smiles a lot, spreading joy to everyone. At a young very young age, he already knows about faith and optimism, and that is what I love about Kenneth most."
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I am still in contact w/ Kenneth up until now and he is still the jolly and strong child that we've met during the 1st time in 2007
any update about kenneth's latest status or condition???
ReplyDeleteHi Jessie! I get to chat and exchange text messages with kenneth every so often. The last time I got to talk with him was last week and he is doing great; cheerful as always like he's not in that condition. Anyway, his mom is on facebook and kenneth is often using it as well. Just search Marites Baladjay :)
ReplyDeleteHello Kcat! I'm a nurse currently enrolled in my masters, and I'm about to do a presentation regarding the rare endocrine and metabolic diseases present in the Philippines. Fortunately, I was able to watch the Reel Time episode featuring Kenneth and I became really interested in his case. So since you seem to be well acquainted with him, can you tell me a bit on how he first manifested with his sickness, if you know? And what was it that prompted the family to seek medical attention? I hope you can reply very soon. :) Thank you! I hope you are doing well, too!
DeleteHi Kcat! I am a nurse currently enrolled in my masters, and I am about to do a presentation regarding rare metabolic and endocrine diseases in the Philippines. Fortunately, I have seen the episode featuring Kenneth and I was deeply interested in his case. That's why I searched all over the net and came across your blog. :) Since you seem to be well acquainted with him, may I ask if you know how he began with his disease manifestations? And what was it that prompted his family to seek medical attention? .. I hope you could reply soon. I would appreciate it very much! Thank you, and I hope you are doing fine as well. :)
DeleteHi Renee! Can you email me at kcatyarza@yahoo.com and I could send you kenneth's contact details so that you can have your questions directly answered by kenneth's family.
DeleteOk.That's great to hear. =)..Im hoping to meet him and give whatever help I can give to him. =).haha.anyway.Thank you and I hope you are doing great also.God bless.
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