Monday, November 24, 2008


My beloved mother in law, Madam Y L Kwok, has passed away peacefully on 23rd November 2008.

My late mother in law was an instrumental pillar stone in my epileptic life. She knew what epilepsy is about and encouraged me to be relentless in my epilepsy awareness work. She was also my dear partner in a lot of my fund raising work.

She exudes compassion, humility, elegance, beauty, grace and love.

This epilepsy legacy blog is dedicated to my late mother in law in remembrance of her. I will miss her deeply.

As a mark of respect for my mother in law's demise, a period of silence will be observed. There will be no further postings in this blog from today till January 2009.

Sunday, November 16, 2008


Lennox-Gastaut syndrome is a severe form of epilepsy. Seizures usually begin before 4 years of age. Seizure types, which vary among patients, include tonic (stiffening of the body, upward deviation of the eyes, dilation of the pupils, and altered respiratory patterns), atonic (brief loss of muscle tone and consciousness, causing abrupt falls), atypical absence (staring spells), and myoclonic (sudden muscle jerks). There may be periods of frequent seizures mixed with brief, relatively seizure-free periods.

Most children with Lennox-Gastaut syndrome experience some degree of impaired intellectual functioning or information processing, along with developmental delays, and behavorial disturbances. Lennox-Gastaut syndrome can be caused by brain malformations, perinatal asphyxia, severe head injury, central nervous system infection and inherited degenerative or metabolic conditions. In 30 - 35 percent of cases, no cause can be found.


Treatment for Lennox-Gastaut syndrome includes anti-epileptic medications such as valporate, lamotrigine, felbamate, or topiramate. There is usually no single antiepileptic medication that will control seizures. Children who improve initially may later show tolerance to a drug or have uncontrollable seizures.


The prognosis for individuals with Lennox-Gastaut syndrome varies. There is no cure for the disorder. Complete recovery, including freedom from seizures and normal development, is very unusual.


The NINDS conducts and supports a broad program of basic and clinical research on epilepsy including Lennox-Gastaut syndrome. These studies are aimed at finding the causes of these disorders, improving the diagnosis, and developing new medications and other therapies.

Go to this link to view a list of studies currently seeking patients.

Epilepsy Foundation
8301 Professional Place
Landover, MD 20785-7223

Tuesday, November 11, 2008


No one can know the potential,
Of a life that is committed to win;
With courage - the challenge it faces,
To achieve great success in the end!

So, explore the Dimension of Greatness,
And believe that the world CAN be won;
By a mind that is fully committed,
KNOWING the task can be done!

Your world has no place for the skeptic,
No room for the DOUBTER to stand;
To weaken your firm resolution
That you CAN EXCEL in this land!

We must have VISION TO SEE our potential,
And FAITH TO BELIEVE that we can;
Then COURAGE TO ACT with conviction,
To become what GOD MEANT us to be!

So, possess the strength and the courage,
To conquer WHATEVER you choose;
That is destined FOREVER to lose!

--- Author Unknown

source :

Monday, November 10, 2008


November is here again. It is that month of the year where medical personnel, health specialists, people who work or volunteer their services in epilepsy societies, epilepsy health bloggers, caregivers and people with epilepsy will do their best to cast epilepsy out of its great darkness into the living bright daylight of the world.

They conduct epilepsy workshops, give talks and seminars regarding epilepsy, promote epilepsy awareness through radio/television talks and interviews, contribute articles and testimonies about epilepsy in the press, hold special fund raising events in conjunction with epilepsy month, sign epilepsy petitions, etc and etc.

On my part, I have an epilepsy poster to share with everyone. The poster has six pictures showing steps to assist someone in a state of seizure.

1. Slip pillow/towel under head - This is to protect the head from injuries.
2. Loosen clothing around the neck - Helps the person in a state of seizure to breath better.
3. Turn the body and head to the side - This is called the recovery position.
4. Do not insert/force anything between the teeth - This can cause further injuries.
5. Do nothing, leave the person to recover - Wait with the person.
6. Assure the person that all is well - After the person has regained consciousness.

Please take special note of the simple steps in helping a person in a state of seizure. Make sure you are helping in the right ways.

Friday, November 7, 2008

My Inspirational Blessing

This world is so hurried, so very frosty sometimes. We brush by people, hustle through crowds, so caught up with living that we forget about life. We forget about others, we fuss over the details, fret over insignificant mishaps, and harbour worries of tomorrow that may never come.

Amidst these incessant doings by the common people of this world, there are people who spend each day waiting for someone that may never come, waiting for words that will give them courage to face another day, dying inside for want of something as small as a smile, a kind word, a squeeze of the hand, or someone to listen, so that they know they're not alone in this world and that their life is worth something... ...that epilepsy does not fail them.

Thankfully, I know of one, one fine lady, epileptic herself, who has risen above and is determined to do what she can about epilepsy. It may not be much, it may not go far, but she never lets go of the hope of ‘what if it does’?

Confronting the afflictions as a consequence of epilepsy is beyond my ability. Embracing epilepsy? I cannot even put a thought to that matter. An epilepsy activist - it is great work, sheer in its magnitude and seems too big to tackle, but Serene does what she can. It might be hard and tedious, but Serene does what she can. She may not have what it takes to finish it now, but Serene does what she can. She may not have the means to go far, but Serene goes with what she’s got. She might not be able to do much, but Serene does what she can. It might cost her everything, but she would do it anyway.

Her once little and insignificant sphere of influence has evolved manifold because of what she has done with her life; her purpose to live each day is identified by the beauty that lies within her imperfection. Tears from her painful confrontation of epilepsy may have once traced the patterns on her cheeks, she may have once spent days wondering what is to come, but today, bitter sweet as it is, she knows that she will never allow epilepsy itself let her down. And for this reason, her grass is always green because she accepts life as it throws itself at her, and never misses the roses for the thorns.

And no, it is not all ease and bliss, for epilepsy is mysterious, and the pain of the great unknown is real. This crushing uncertainty can easily allow the insecurities to take over, and let sorrow eat up the beauty of living. But take heart, for the pain we are made to bear in our lives can destroy us or can very well build us up, and this blog is a testimony to the lives lost, lived and loved through the eyes of an epileptic.

Very often, circumstances arise to shape us into who we are and what we do. Though epilepsy has not changed my life per se, but in circumspect, it is a great reminder of my own weakness. Coming across the life behind this blog has revealed to me how to see past the dirt in my own eyes and to break the shackles of deeply held fears. It has stretched me to new levels of courage an appreciation for life through witnessing the beauty of Serene’s fighting spirit. I encourage you to follow this blog, but more so, the life behind this blog, for as the name says it – a legacy is to come.


Written by Clara Wong C H
(A Christian friend of my son, Edmund. She is a kind, compassionate and caring friend to everybody. She is also a very bubbly and cheery person who loves serving in God's ministry. She actively participates in her local Christian cell group - 'Lighthouse 2' in Melbourne, Australia.)