Jase was a beautiful 8 pound and 1 ounce bouncing baby boy when he was born on March 27th of 2011. He was everything we had hoped for; 10 fingers, 10 toes, a head full of hair, and healthy. So we thought! Soon after he was born, he developed what we now know of as a nystagmus. Puzzled, our pediatrician sent us straight to Children’s Hospital the day of his 8-week check-up. They ran test after test with nothing to show. My motherly instinct kicked in knowing that something was wrong, and I begged for more testing. Three days later, we got a call from the neurologist telling us that he wanted to see us in his office the following morning. Our hearts sank!

The next morning, our family piled into that dreaded small white room where we received the unbearable news. Our son had Canavan disease. Prognosis, death. The next 2 months became a whirlwind of bad news, long hospital stays, trips to specialists around the country, fundraisers, tears, heartache, and prayers.

We were soon connected with a Facebook page of families that had affected children. They became our friends and our support. They helped us with the hardest of questions; “How could this happen?” “We aren’t Jewish!” “Did we just get struck by lightning?” Our new Canavan family quickly welcomed us with open arms and shared with us a non-profit organization called the National Tay-Sachs and Allied Diseases Association (NTSAD). NTSAD gave us hope and direction, but with every effort, every drug, every doctor, every trial, the inevitable happened. On August 14th, that same year, our sweet baby boy passed in his sleep curled up between Mommy and Daddy.

NTSAD immediately reached out to us with comforting words. They were God sent at such a tragic time in our lives. We stayed in contact with them over the next few months and decided to attend our first Annual NTSAD Family Conference. There we poured our hearts out to people we didn’t know, but would soon become our adopted family. Words cannot express the feeling of being surrounded by people that know exactly what you are going through. It felt safe, secure, and comfortable. There was no judgment, only hugs and words of encouragement.

I quickly got involved with fundraising and family outreach committees, as I was full of hope and determination to live out my little boy’s legacy.

Mommy and Daddy love and miss you so much, Sweet baby Jase!