Although rare, the occurrence is believed to be ~ 1:40,000 -60,000 live births, making it one of the most common forms of genetic epilepsy. Currently, there are two children diagnosed with CDKL5 each week.

CDKL5 is a deficiency disorder characterized by seizures that begin in the first few months of life. Most cannot walk, talk or feed themselves, and many are confined to wheelchairs, dependent on others for everything. Many also suffer with scoliosis, visual impairment, sensory issues and various gastrointestinal difficulties.

Unfortunately most of us spends a lot of our times complaining about how life can be unfair and forgetting about all the blessings that we have; not knowing that in reality there are some less fortunate individuals and kids who suffers from this disease and who are unable to even express their thoughts. 

As I turn 30, I am taking this time to reflect on my life and all the things that I have taken for granted. I would like to somehow give back in my little way by raising awareness on CDKL5 and raise money that supports this charity and this cause.I also would like to encourage everyone to take a step back and appreciate the things that we have- not to feel sorry for those who "does not have" but instead to be gracious of "what we have".

This coming May the 18th, myself together with my husband Rocky and dear friend Pam - will be doing the BeGungHo 5K to raise money for CDKL5 UK - which is a great non-profit organization that is committed to supporting research into the CDKL5 Disorder.

If there is one thing that I would like to ask from you for my 30th - it would be to support this cause and if you have spare pennies - please please donate. Every single penny will count towards my target and will go a long way. Please also share and spread the word so that  more people will know about this.

Lastly, I would like to thank Lindsey and Nick for letting me do this. I am fortunate to have met wee George who is the inspiration of this fundraising. If you like to learn more about CDKL5, follow the link below:

https://ghr.nlm.nih.gov/condition/cdkl5-deficiency-disorder