Hayden is the bravest four year old I have ever met!

She has a rare form of epilepsy called Dravet that causes seizures and various developmental delays.

The thing that almost amazes me more though is how brave her parents, Sarah and Marcus, are. She can have seizures at any time and various things can cause them to onset-the temperature, an illness, or even getting too excited. I can’t imagine having to constantly worry and wonder when my child is going to have her next seizure. Knowing that you can’t go on vacation or too far from home, because you have to stay close to a hospital in case you need to bring your child there.

The time commitment that comes with a child with special medical needs like this is astronomical. Sarah always has something she needs to do for Hayden’s care every day; physical therapy, occupational therapy, speech therapy, doctor appointments, or phone calls with medical insurance to fight for what Hayden needs to be taken care of.

This time constraint caused Sarah to have to quit her job so she can take care of Hayden full time. Marcus works so hard too, working two jobs to try to compensate for lost income. I know it’s got to be hard on him to not be with his family as much as he’d like, and hard on Sarah too-anyone who knows what it’s like to watch a kid all day long by themselves knows how exhausting it is. Imagine being ten times more exhausted because she has to keep her eyes on her 24/7 and Hayden doesn’t go to sleep til like midnight! She literally has like no time to herself.

When I first learned about this disease, I was honestly surprised at how well Hayden seems to be doing, but I believe she’s doing better than some other kids with her condition because of how hard Sarah fights for her and how well she takes care of her. Sarah truly is just the best mom! I look up to her in so many ways! With a mom like her, I know Hayden is going to continue to be a fighter and thrive!

If you are interested in Dravet and how it effects families with children who have it, check out their site here -and donate while you’re at it if you feel inclined! I know one little 4 year old who would be appreciative!

She loves to dance and spin!

Check out that Beyonce hair with the wind!

LOOK AT THAT FACE!!!

OMG. I think this one is my absolute favorite from our time together!

Hayden and her sweet medical dog Muai. He’s learning to take great care of her and assist her if she falls from seizing and to help her walk!

Sniffin some bluebonnets like a good ol’ Texas girl!

And next…my favorite part-BLOOPERS!

She had some REALLY great bloopers! 🙂

Don’t forget to check out the Dravet website for information about Hayden’s condition!