A Smile To Brighten Any Day: Our Journey With Dravet Syndrome

By Ashley Walker Benjamin

Hello friends! I would love you to meet my happy, kind souled son, Mikes. He is one of the most beautiful people I know. This kid is filled with so much love, joy and has a smile that can brighten anyone's day. If you know Mikes, then all you know is pure love and happiness because that's all he gives when you connect with him. All you can do is smile when you see his smile. :)

Mikes & his mama Ashley, on 2/10/19, prior to his major incident.

We went to the cow Palace, there was a reptile expo at this time. Mikes just loves all types of animals. We end up getting a bearded dragon, It was my cousin but she shared him with us. This was actually a few weeks before Mikes life changing incident on February 23, 2019, where he seized for an hour and a half long, they couldn't find a vein. He went into liver and kidney failure, this was when our life changed dramatically. After this incident Mike was no longer verbal, he was not able to walk he was not able to feed himself, or use the restroom his own. It was as if he reverted back to being a complete newborn. His brain had swollen so much it completely altered his brain function. This is called encephalopathy. All of this stemmed from his underlying epilepsy known as Dravet Syndrome. Today Mike is strong, growing, thriving and progressing more than anybody could anticipate. I am so proud to be his mom and I look forward to his brain healing completely in the future.

Ever since Giancarlo was born he always looked up to Mike. Everywhere Mike was Giancarlo needed to be there. It was so cute Mike would get so flustered sometimes because Giancarlo just wanted to be all up under him. Before Mike was the one that was looking out for Carlo and watching out for him and now Carlos the one looking after Mike and helping me give him water boluses and helping him with his gravity feeds. They are best friends and they have a beautiful bond. I am so grateful for my nephew Giancarlo. Mikes loves his baby cousin as he use to call him.

You know your kid always has a special vibe with their aunt and Mikes has that with my sister, Angelica. He always had a bond with her since he was a lil nugget. He loved being in her room, in her bed, painting and drawing with her when he was younger. Although he is nonverbal now, he completely understands what you say to him. Every time I mentioned she's coming over my house or we are going over her house he always has the biggest smile on his face. It brings me so much joy because he loves his Auntie.

So I saved the best for last. My aunt who took care of me since I was a child was the one who was helping me take care of my son since he was a baby. Gigi is just as close to him as me. They had their special bond and they still do to this day. Gigi and Mikes always went grocery shopping together and everybody knew him in Safeway. When he was starting school she fed him in the morning, she got him dressed, put him on the school bus while I was on my way to work and I am forever grateful for her and how she helped me take care of my son. Gigi is also the one that was the one taking us to UCSF San Francisco every time he had a fever or if I knew something was off with him, GiGi was the one that was taking us to the hospital and dropping us off. She was bringing food for me when he got admitted, bringing our clothes his toys. GiGi helped me out in my life so much I could never repay her, all I can do is just love her just as papa does (she's calls him papa). Mikes gets so happy and excited when he hears her voice on the phone and when she comes over and visits us. He knows his Gigi and he loves her with every ounce on his being. If you knew Gigi you would love her too. We have such a wonderful support system. And all of my family and friends you all know exactly who you are. We love you, we see you and we appreciate everything you do for us. Thank you. If you want information on Dravet Syndrome click here: https://www.dravetfoundation.org/