Stephen's Bucket List Dream

Our friend Stephen is an incredible and inspiring young man. He was born with a  rare genetic condition , Epidermolysis Bullosa,  that leaves him with very fragile skin and  large wounds over most of his body which  will never heal. He  is   wrapped  in layers of bandages , can no longer walk and suffers from   limited use of his hands. His daily life is   centered around dealing with   often excruciating pain, dressing changes and  medical appointments.  It's  easy to get down  with this brutally challenging life but Stephen  fights it hard.   He learned this in part from his  much loved father,  a Marine who died suddenly when Stephen was 8.   Despite such a devastating loss, Stephen carries on with bravery and determination.  Everywhere he goes he manages to inspire and charm others; he has the greatest laugh and wit, and a  real soft spot for underdogs. He is passionate about Nascar , collecting things, music, movies, milk ( yes it's true!),hanging out with friends, playing his xbox. He has big dreams for a life of fun despite it all. After he turned 18 this year,  time became more  precious  and  we needed get to work on his Bucket List. The first and biggest one was to go to the Daytona 500...and it's about to happen! Through one  miracle after the next his life long  dream is coming true. It started with his nurse buying the tickets for the race  out of her savings,  one of his doctors helping with the plane tickets, and  his UPS driver starting her own small  fundraiser.  Then on Christmas Eve, Stephen  got the best gift ever.... a phone call from the president of the Daytona  International Speedway ! He was so moved and inspired by Stephen ,  that he refunded the  complete amount of the  tickets,  and is  making  Stephen his personal guest for the entire weekend at Daytona. It truly is a miracle and those of us close to Stephen have cried more than a few happy tears. Stephen himself has been counting down each day since Christmas. Originally we wanted to do  just a  Go Fund Me to get him to Daytona, and we  do still need   funding   to  cover the remaining  costs  but we've also   seen how the reality of  his dream coming true,  has   lifted  Stephen up and helped him through some very painful days.    Because there is so little he can physically do,  focusing on his bucket list gives his life meaning. It's not easy to be an 18 year old man and feel like you are useless or   that your future days   will  be filled with  pain and  loss so  we would love to always have something ahead for us to plan and be excited about. Trips to NYC, a visit to the Nascar Hall of Fame, Universal Studios, a cruise,  museums, the Boston Aquarium,...as long as he is able to, we want to make his dreams come true and keep giving him a reason to fight this terrible disease.
  
Our hope is that   we can join as a community  to  give Stephen  a better life through helping him realize some of those bucket list  dreams. There is nothing  more beautiful then  seeing him smile and listening to that great laugh. 
We look forward to sharing his future adventures with all of you.  Thank you so much! 

We've included a few videos here so you can see the awesomeness of Stephen!
https://www.youtube.com/watch?v=HzvKqJctsIk https://www.youtube.com/watch?v=dSCIDnFgXfc https:///https://www.youtube.com/watch?v=howOay9FKx4 https://www.youtube.com/watch?v=howOay9FKx4