At first look, you would say he's like any other children, living a normal life. He's not. Everything he does is probably ten times harder than other children his age. In order for him to cope, we have to enroll him in some enrichment programs that will make learning easier and enjoyable for him. This October, he is attending a boot camp. A big chunk of the proceeds of this campaign will be spent for this boot camp and the remaining will be for other programs that we would like to enroll him in.
At the age of 1 year and 9 months, he was diagnosed with Complete Agenesis of the Corpus Callosum. According to National Organization for Rare Disorders (NORD), it is characterized by a partial or complete absence (agenesis) of an area of the brain that connects the two cerebral hemispheres. In his case, this part of the brain is totally absent.
This condition is non-life-threatening, but it's making life harder for him. He wasn't able to speak until he was 4 years old. He is now 10 years old but his ability to memorize, process, remember and understand things is like that of a 6-year-old.
But Lien is such a fighter. Despite his condition, he tries his best to thrive. Just like other 10-year-old boys, he's now in 5th grade. Yes, he did not have the highest grades but he did not fail any grade level. I could only imagine how much effort he needed to give. But talking about his challenges, this is just the tip of the iceberg. When he was still attending a regular school, his classmates did not know his condition, so if he was not able to answer a question that is easy for them, they would call him names. If he got lower scores on his exams, they would bully him. He's always being compared to somebody else.
In times like these, it occurs to me that children with down syndrome are luckier than him because if they were not able to do what is expected of them, people would understand and would not judge them. Again, this is a non-life-threatening condition, but as long as he lives, he will live in a world where people are quick to judge and slow to understand. Incidents like these crash his self-confidence that we've worked so hard to build all his life.
His heart does not know how to hate. He is a happy person. He has a dream. He would always tell me, "Once I got a job, I will buy Dada a racing car and get you a big house that we will call Home Sweet Home." He is a loving son to us, a caring brother to his little sister, and a faithful son of God. He is currently serving as a choir member in our church. We allow him to have a life like others. We decided not to let him know about his condition so he wouldn't think he's different. We just do as much as we can to give him the assistance that he needs in order to have a normal life.
He may be slow when it comes to academe, but he is gifted in other aspects. He was able to ride the skateboard and bicycle without training wheels at the age of one year old. His senses are so sensitive that at the 3rd-floor apartment where we live, he could tell whether the person coming is his daddy (or not) just by how the gate sounded (to think that there are a lot of people living in our compound). He could easily tell if we are hiding something from him. He'd ask me, "Mommy, are you okay?" just with the slightest change of my mood.
With these, I have come to believe that success in school is not equal to success in life. I believe that our son has a bright future waiting for him. With your help, Lien will have a greater chance of living a normal life.
PS. If you do not have a credit card or Paypal account, you may deposit to my BPI account:
Bank of the Philippine Islands (not family)
Savings account number 3549-0445-05