Gabriel

Gabriel's Story

Gabriel is a determined little boy. He came into this world on his due date, fast and furious, after a speedy 2 hour labor and nearly being born in the van! 9lbs 3oz of chunky perfection. We got to leave the hospital after birth, high on life, believing we had a perfectly healthy newborn baby boy.
We began doing what all parents do. Dreaming.  It’s a natural thing to do. We make plans for our future every day without even realizing we are doing it. We dreamed of who he would be, what sport he would like the most, which one would he be best at. He is such a big boy, surely he is going to be a line backer! Would he be a class clown or a hot head? How many of Eliana’s boyfriends would he scare off before one stuck around? Is he going to get into trouble at school with that temper?

You know, all the dreams and thoughts a parent has when they have a child.

You can quickly find lots of detailed information on Hunter Syndrome with a quick Google search. You will read harsh, blunt descriptions of what this disease does. How it takes a completely normal-looking and developing child and slowly starts rearing its ugly head until it’s so apparent that someone picks up on it and turns your world upside-down.

How the ear infections were an early sign.

How the sweet snoring was an early sign.

The plump lips and big, beautiful eyes framed by perfect eyebrows were early signs.

The cute Buddha belly is an enlargement of internal organs.

The loud breathing is due to a restricted airway.

The late walking and limited speech are not just because my baby was a late bloomer.

My perfect baby has a terminal illness that some refer to as “Children’s Alzheimer’s.” Because it slowly starts taking away skills and effecting every system of the body so mercilessly.

Hunter Syndrome stole all 20 words Gabriel ever spoke.  I miss hearing his precious little gravely voice more than I can express. He works so hard to communicate and our dream is for him to find his voice.

I never imagined having to make the decisions we have made for our child. Clinical trials and invasive procedures have become part of his life, in an effort to save it.

I ask you to have faith and hope. Spread awareness and let people know that although this is very rare, it is REAL and it is HAPPENING to beautiful children. It is worth funding, researching, and CURING. Gabriel is worth it!

As for my sweet Gabriel. He is a mischievous little firecracker. Our lives truly revolve around him! He loves to snuggle up on the couch or in front of the fireplace with his tablet and watch his favorite movies. He lays his head on you, holds your hand, or will wrap your arm around him for comfort. When he needs a snack, he will take your hand and lead the way to the kitchen! Process of elimination will determine what he wants; once he stops pushing things away, he will grab it, smile, and take off back to the couch with his precious treasure to chow down!

The look on his face and the sound of his belly laughs when he gets into a pool or sees the ocean makes all the worries of the world melt away for a moment. His sweet innocence melts my whole heart.

My son is amazing. Help me save him and other children like him by spreading awareness and advocating for a cure!

#GaberStrong   
#MPSII
#MPSAwarenessDay
#ProjectAlive
#NationalMPSSociety
#chasethesigns
#huntingforacure
#neverwanttomisshim