Mighty Man Marek

Marek has been working hard this last week. We have been adjusting to my mom being gone and trying to figure out sleeping arrangements. As...

Marek did great during the EEG. He fussed while they put his leads on but once his little hat was on he was the best baby. As soon as he wa...

Marek has finally adjusted to his medication, Sabril/Vigabatrin. When we started the medicine last Friday he was very tired and fussed all...

Marek's benefit on Saturday was absolutely amazing. It was very emotional for both of us but in a good way. We have never felt so muc...

When I say that this journey is a roller coaster ride I am not exaggerating by any means. Marek can do the littlest positive thing, like whe...

We are SOOOOOOOOOOOOO excited. It has been over a month since this happened! Literally skipping around the house, doing cartwheels and sin...

Dear Infantile Spasms,  You suck! You have taken away so much from our son and our family. You have brought fear, sorrow and anger to a n...