#westsyndrome #epilepsy

Today is the Epilepsy Awareness day. As a mom of a kid who suffered from a catastrophic form of infant epilepsy known as the West Syndrome, I know how tricky epilepsy may be. We need to better understand this disease, advance medical research, develop equal counseling and community support for patients and caregivers.

I want to share a message of hope. My daughter Lila is now 2.5 years old and she started to talk! She says phrases, she compares things, she can count so fast I am astonished. Yesterday we saw a couple with dogs at a cafe and she said five dogs. I could only see four of them but she saw little extra paws hidden under the table ;) What a smart little human she is!

May all parents who are going through this journey keep hope in your hearts. We were promised our daughter won't ever walk or talk or even sit by herself. And here she is, thriving! And if you need any help with understanding West Syndrome, contact me. I am happy to help.

My daughter Lila celebrates her 2 year anniversary today! She is such a wonderful human, I am so happy to be her friend and mom. Lila had a severe form of epilepsy known as West Syndrome which started when she was 5 months. Her first year of life was a struggle – she endured a very difficult treatment by steroids and anti epileptic drugs.

But she managed to get rid of her seizures! And she learned how to stand up all by herself. We spent her second year at physical therapy sessions, she had 6 intense therapy weeks with 4-5 hours of courses per day. We practice DIY sensory therapy, ergotherapy, speech therapy etc at home. I had learn so many things to help her thrive!

And she started to walk at the age of 21 months. And then run and dance! And so much more... I love her so much, my little warrior princess 💖

If you know other kids with West syndrome, share this with their parents. I am happy to help them. It's a hard road, no one should be alone facing this #westsyndrome #epilepsy