Surgery Day + GivingTuesday + 9 Days until Nick's 4th Birthday

Today is a big day for our family.

Nicholas (Nick) is 3 years old and has MPS II, Hunter Syndrome, a rare and devastating disease that only affects boys.  This disease causes him to be missing a key enzyme that facilitates the break down of waste cells, and without this enzyme he cannot purge these waste cells from his body.  This waste acts as a toxin, and builds up and gums up the works of vital organs, joints, including one's brain.

Nick's Surgery

Today, Nick is getting a port implanted to begin his participation in a clinical trial.  This is a tough day for us, as no one wants to see someone so small suffer or go through a surgery, and all surgeries carry risks.  For our family though, we're a rare disease family, we're accustom to facing these things head on with all the courage and bravery we can muster.

Please think of Nick today, and our family.  Help us hope for the best possible outcome.

Giving Tuesday

Interestingly, this day, a momentous day in history for us aligns with the start of #GivingTuesday (Giving Tuesday ends the 2nd of December). This is the start of a season of giving where we support our favorite causes, those that speak to us. Please consider picking us as your cause.  Alex is home today in Cleveland, as he does not qualify for this clinical trial.  We currently don't have any treatment options to affect his brain, and improve cognitive function.  We would love to win one of the monetary prizes CrowdRise offers (up to $250,000) for MPS II research!

Here is a link to our CrowdRise

https://www.crowdrise.com/RaisingRareBoys/fundraiser/amycherrstrom

Maybe consider giving $3, $4, $9, or $25 in honor of two things - Nick's upcoming birthday on December 3rd where he will turn 4 and today's date where he will become part of a clinical trial that our Hunter Syndrome community holds dearly to help save our children.

If not consider supporting some of the precious organizations that provide so much hope to our families, here are a few:

http://mpssociety.org/

http://globalgenes.org/

Ann & Robert H. Lurie Children's Hospital, specifically the Genetics Department (Dr. Burton)

Nationwide Children's Hospital, Center for Gene Therapy, http://www.nationwidechildrens.org/

University Hospitals, Rainbow Babies & Children's Hospital: http://www.uhgiving.org/uh-giving, specifically Rainbow Rehab (speech therapy, audiology)

Have a wonderful holiday season!

The Cherrstroms