Xavier was born 4 weeks early. Adrienne and Anthony, Xavier’s parent’s, had no indication that there was anything wrong up until this point. After his birth, X (as his family calls him) started experiencing seizures and was placed in the NICU for 32 days where he was finally diagnosed with Unspecified Cerebral Palsy. After numerous tests, surgeries, and a rollercoaster mix of emotions, they were finally able to take baby X home. Though it wasn’t the road they were initially expecting, it was apparent from the moment I walked into their sweet cinnamon scented home, that they are completely committed to doing whatever it takes to give X all the opportunities possible. They were clearly completely head over heels in love with their baby Xavier.

What I loved most about Adrienne and Anthony is how determined they are to make sure that X gets to experience as many of the things any child would. This includes taking him to sit on Santa’s lap, being silly together, and playing dress up for Halloween. Xavier even has his own blog where they post updates and pictures- http://aboynamedx.blogspot.com/

Love it!

Let’s meet X! Poor guy was sleepy for the photo shoot, but that’s okay- we still had fun with him!

Xavier::

20 months old

Favorite thing to do::

play in his visual stimulation box- and he loves ipads!

What makes Xavier a hero?

he is a great baby, loves to have fun.

What is the hardest moment you have gone through during your journey?

At about 6 months, after coming home and being alone, with no nurses, doctors, or hosital staff nearby, there was a moment of realization that things really are going to be different for us. Even though we didn’t want it to be. Once we were home and away from the doctors we realized that this was our new life.

What has been the best moment you have had during your journey?

When Xavier made his first smile. His first laugh. That was a great day- also getting certain serious surgeries behind us was great.

If you could tell Unspecified Cerebral Palsy one thing, what would it be?

Go away!

If you could have one wish, what would it be?

To have Xavier grow up to be happy and live a typical childhood.

What would you tell other parents who have a child with this illness?

Don’t dwell on what could have been. It’s a bumpy road but work as hard as you can. Most importantly, don’t doubt yourself as a parent.

love the sillliness! :) hehe

i had to post this because this is the opening song on X’s blog. not only do i love it, but i think it is perfect for this little family :)

“Inspiration Through Art (The Littlest Heroes Project) is a non-profit organization dedicated to empowering young people to give back, and make a difference through the beauty of art. We are artists with a passion for giving and inspiring others. Through our own artistic talents we are able to come together as one, to let children around the world know that they are loved,despite the challenges they face everyday.

If you have a child, or know a child, who suffers from any type of serious illness or life altering disability we are here to help. Inspiration Through Art provides our special heroes with complimentary photo shoots, special cards and mail, gift packages, and various  other programs, events, and fundraisers”

For more information on Inspiration Through Art (The Littlest Heroes Project) visit their website at http://www.inspirationthroughart.org/