Fly High Drew

Drew Ferrandino

February 1, 2002- September 30, 2014 

For the past week or so I have been trying to find the words.  The words to say to Drew in the days after he passed.  The words to say to my dear cousin who just lost his brother.  The words to say to my aunt and uncle as they mourn the loss of their son.  The words to say to my mom as her heart breaks for her younger brother.  Or even the words to get me through this.  The thing is, there are no words.  My heart just hurts.

My heart hurts for my Aunt Katie.  Drew was her world.  Her days revolved around taking care of him.  She knew his needs and his comforts like no one else.

My heart hurts for my Uncle Tony.  He would have done anything for Drew.  He is a human encyclopedia (my aunt is too) about the disease and spoke at many conferences about finding a cure and what it's like to raise a child with special needs.

My heart hurts for Gavin.  He was the greatest big brother to Drew.  He included him in his baseball tournaments where Drew was an honorary mascot.  He was also so gentle, caring and loving to Drew.

And my heart hurts for us as a family.  What will life be like? Holidays? Birthdays? Trips? And all the other get-togethers?  How can we ever call it a "cousins" picture again, because we'll forever be missing one.

Though to most of us 12 is way too young, for Drew it was a full life.  We celebrated his 5th birthday a few days early because doctors told us he wouldn't make it until then.  Then he was given a life expectancy of 8-12 years.  With a number of scares, Drew lived a full seven and a half years after being diagnosed with Batten Disease.  He did live a beautiful life- full of love and memories.

Drew was an inspiration to all whose lives he touched.  From his first seizure to his diagnosis to his stem cell trial to his spinal surgery and every hospital visit in between, his strength never wavered.  Drew inspires all of us to defy the odds and keep smiling no matter what is thrown our way because that's what he did until his very last breath.

Though I'm sad for us, I'm happy for Drew.  I'm happy that he gets to run and play and jump and laugh and be a jokester- all things he loved to do before the disease took them away from him.  I'm glad he no longer has limitations.

My heart may hurt forever, but the comfort of knowing he's with Jesus and at peace takes the sting away just a little.  I'm grateful for the years we had with Drew and the countless lessons he taught me about strength, fight, courage, hope and faith.

The coming weeks and months are going to be hard, for all of us, but I know we'll get through it and live each day with Drew in our hearts.  His inspiration will live on forever.

For more information about Drew or to make a donation to help find a cure for Batten Disease please visit www.drewshope.com