Hi, this is Angeal, who has been suffering from dravet syndrome since he was 3 months old and he's 15 years old now. What is dravet syndrome you ask? In a nut shell it's an epileptic disorder that deprives the common development of a child. So imagine suffering from it for more than a decade? It has an array of symptoms and statistics say that 1 in 40,000 people suffer from it. Taking care of him has a big toll in one's life. People with dravet syndrome, need full time care beside them. Basically this is my job now, twenty four hours a day, seven days a week, three hundred sixty five days a year. Epileptic episodes vary from each person, some suffer from 10 to more than a hundred a day. From a few seconds long to 10 or 20 minutes or even more. It doesn't matter whether they are sleeping or awake, they will experience an attack from any time of the day. Angeal's routine, differs each day. That's why sometimes, I can't even leave him just to go to the bathroom.

 How about treatment? The treatment for the condition itself is still non-existent. To overcome it, we need to minimize or control the amount of seizures that they experience. To do so, various drugs like diazepam and like are given to the patient. Sometimes you'd know from others that they are using a cocktail of medicines combined. Thus, giving a heavy toll to their own body to process every single day. I've also read that canabinoid medication helps. However, due to the laws of our country, it's really not easy to avail such medicine, Albeit, it shows promising results it's not easy to get it like purchasing other drugs like you go to a pharmacy and purchase it. Ketogenic therapy, it has great strides like canabinoid,, it's not that easy to avail because there are only a handful of hospitals and specialists that can accommodate the treatment. And that's not the least of your problems. Because the condition is rare and the medication or treatment is really needed thus, it comes with an exorbitant price. Seizure meds alone will back you down 10 thousand pesos a week. For other specialized treatment would cost more than 20k to 60k. I've researched that an effective canabinoid would be at least 15k to 60k per bottle that would total to a minimum of half a million a year. I'm a single parent, who can't find a job because of my son's condition. It basically makes everything hard to come through. 

 I'm here to raise awareness of my son's condition. As a parent, I desire the same things any other parent would want for their children. A happy life. I know there are other parents like me, who has a kid that suffers from dravet. I would love to listen or be in an organization or foundation that fights for the same cause as mine. I would love to sit down and listen on how to make my son's life easier. I would be happy to share my thoughts and experience to another parent experiencing the same conditions. The sleepless nights, the fatigue, the fear that losing your kid is relatively close with every epileptic episode. I'm grateful everyday that I get to see my son live another day. Though I'm exhausted, without sleep, and stressed. I will push through everything for Angeal. I am humbly blessed because I have a wonderful family and good friends that support me all the time. I know there's hope and help out there. I know in the future we might be able to cure dravet. For now, I just wish my son to enjoy life. I know there are foundations or groups that can help me and I want to be a part of it. I know there's an easier way to get medication for dravet, and I would love to learn how to get it. And I know a lot of people are praying for Angeal and other kids around the world with the same condition. And I would greatly appreciate more prayers. Thanks for your prayers and help in advance. And thank you so much for taking the time to read Angeal's story. God bless and have a great day.