When Daren Lee started to blog about his son’s epileptic condition in 2006, little did he realise the impact it would create. The blog inspired many, and gave new hope to others.
| The Lees have grown closer through blogging. |
| Nathanael during therapy. |
| Tan says blogging has inspired him to lead a life that is as normal as others. |
By Cindy Koh
IT all started out with curiosity. Daren Lee began fiddling with
blogging sometime in September 2006, when he wanted to start a blog for his church’s youth service. He subsequently got hooked and went on to start to blog about his older son, Nathanael’s epileptic condition.
The blog, www.darentiff.blogspot.com, serves as the main point of
connection for friends and family members to get Nathanael’s updates and progress in his medical treatment. It contains details on how the four-year-old was diagnosed with infantile spasm after going through a series of tests at a local private hospital since he was a newborn, how he started treatment (medical and physical therapies) at a public hospital, and the family’s struggles, joys and courage.
It has been a stressful journey for this father of two and his wife
Tiffany Tang, as they juggle Nathanael’s condition, work and other
responsibilities which can deem the blogging routine challenging. But what kept him and Tiffany (she helps update the site as well) going was the people’s responses to the blog.
Darentiff.blogspot gets from 50 to 100 hits per day and this speaks
volumes for Lee, as it is educating and creating awareness of epilepsy, which is often a misunderstood neurological disorder.
According to a World Health Organization report for the Southeast Asia region, at the global level, it is estimated that there are nearly 50 million persons suffering from epilepsy, of which three-fourths or 35 million are in developing countries. Many people who have family members with such disease are still reluctant to talk about it, as it is seen as a curse or an incurable evil disease.
“The responses have thus far been very encouraging and through the site, the respondents learned, rejoiced and were inspired or ministered to,” Lee says. The family has also made friends online that led to five families from different race and religion forming a support group of sorts. But most rewarding of all, Lee says, is that the family has grown closer through blogging and sharing of information.
The blog has also ignited interest from international viewers, one of
whom is a Swedish professional who asked if he could get a video
recording of a therapy – Snoezelen – that Nathanael is going through. (It is a room equipped with special lights and music to stimulate senses in the child.)
In addition to that, Lee was invited to write about fatherhood for a
Singapore family magazine after the editor visited the blog.
Lee also found out that Malaysians are a compassionate lot. After
putting up a posting on Nathanael’s need for a swing to be set up for his occupational therapy session at home, two good Samaritans offered to do it and they are from the Klang Valley. “What are the chances of knowing anyone who could set up a swing here? It’s amazing!” Lee exclaims.
Looking at the hope and inspiration the blog has given to those who visit, Lee sees himself still blogging in five years’ time, perhaps even further into the future. At Press time, he is setting up a domain, www.darentiff.com, to expand on family interests.
A VOICE FOR AND FROM THE DISABLED
By Izwan Ismail
WHAT inspires someone to write a blog, that in turn, inspire others? For Peter Tan, he blogs to discuss the plight of the disabled people. Wheelchair-bound, the 42-year-old Penangite suffers from spinal cord injury and chronic renal failure.
About five years ago, Tan started The Digital Awakening (www.petertan.com), which chronicles his life as a disabled, and shares his experience with others who may be interested.
Five years on, Tan says his life is now more enriched by the Internet experience.
“Through my blog, I can say that more people now have a better understanding about disabled people and the problems that they face every day,” he adds.
Tan has also managed to make more friends, to share and exchange views. “Most of them are bloggers and people who read my blog. In fact, I have made more friends over the last five years through the Internet than I had before.”
In 2005, Tan initiated a fund-raising campaign for the National Cancer Society of Malaysia, Penang Branch. The organisation had provided hospice services when his mother was seriously ill. To show his appreciation, he and four other bloggers shaved their head and raised more than RM5,000 for the society.
“I am forever grateful to the community of Malaysian bloggers who had chipped in and promoted the cause in their blogs. This shows that blogging can make the world a better place,” says Tan.
According to Tan, blogging has also inspired him to lead a life that is as normal as others. “The last five years have been the most interesting in my entire life. I have travelled long distance, visited foreign countries, drive a car, and even got married. I never thought that these were possible.”
To date, Tan has posted slightly more than 1,000 entries in the five years of his life as a blogger. That makes it an average of 200 entries per year.
On the fifth anniversary of his blogging journey recently, Tan wrote, “It is the archive of my struggle within, the things that I have done and places that I have been. Most of all, this blog is a gift to myself for that one day in the future when my memory is not that good anymore.
This blog is about me, myself and I. It is about my journey through life. These are the stories that I want to tell myself when that one day comes.”
Another inspiring blogger is Maryani Abdullah. She has Cerebral Palsy, a medical condition caused by a permanent brain injury, which makes speech difficult and voice hardly audible.
Through her blog, Art of Body Expression (http://mariannie-missycat.blogspot.com), Maryani expresses her personal views and concerns.
Her blog has also enabled her to connect with other talented disabled individuals to pursue a common interest – performing arts.
“I want to change public perception that we are an incapable lot. I hope to introduce a new type of innovative art performance, which will be accepted by all, and not just by the disabled community.”
In her blog, Mariani posts lots of pictures and slide shows of her performing arts activities and how the performers have developed physically, mentally and emotionally.
“Through blogging, I hope that my voice will be heard, and more will be done for the disabled,” she says.
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