2017 #MyGivingStory Award Winner
By Jennifer Hanebery-Estevez
My Giving Story really isn’t about me at all. It’s about the countless others—friends, family members, colleagues, strangers—who have stepped in to help rescue our family from despair.
My 4-year-old son Sebastian is dying. His body is missing a simple enzyme that breaks down cellular waste. My bright, spirited boy will likely, according to doctors, lose his life to Hunter Syndrome before he reaches adulthood.
But that’s not the most tragic part of our story. The true tragedy lies in the fact that researchers believe they have developed a cure but—largely because of the rarity of the disease—lack funding ($2.5M) to proceed with the clinical trials that could bring the treatment to affected children.
When Sebastian was diagnosed, my husband and I were absolutely destroyed. We spent months mourning Sebastian’s impending death. We lost the ability to take joy in the lively two-year-old in front of us. We wept uncontrollably. We groaned in our sleep. We screamed at the heavens. We felt hopeless.
The beauty of our story, however, may outweigh the heartache. (I must admit that for me the pain is yet too deep to fully adopt this idea, but I do believe that someday I will feel it to be truth.) The silver lining is that others were willing to give when they had no obligation to do so.
My giving story is about the parents who, by the time Sebastian was diagnosed, had been working for many years through the aptly named nonprofit Project Alive to support a cure for Hunter Syndrome, knowing full well that by the time such a treatment was available, their own children would likely have already expired. They continue to offer us words of wisdom, a wisdom that no one else could possess without these shared circumstances. Their many gifts to us are countless but most importantly, they have given us HOPE.
My giving story is about the parents of children with Hunter Syndrome who are currently fighting with us, parents who won’t give up until we raise the money needed to save our children. They motivate me when I’m feeling tired, discouraged, and weak. I am absolutely in awe of these warriors who have given my family INSPIRATION.
My giving story is about the administrators, coworkers, and students who rallied around our family to raise awareness and funds at the school where I teach. They learned about Sebastian’s condition, Project Alive, and the cure we were trying to fund. They spread the word throughout our South Florida community by telling their neighbors and contacting the local news media. They wrote 2,000 letters to Ellen DeGeneres. Because they truly believed they could help change Sebastian’s future, they bestowed upon us the gift of BELIEF.
My giving story is about the doctors, nurses, and child-life specialists at Joe DiMaggio Children’s hospital where Sebastian receives weekly infusions of a synthetic enzyme that helps slow the progress of his disease. At the hospital, Sebastian has endured countless blood tests, imaging studies, and other tests. Since his diagnosis, he has undergone multiple surgeries. He has received over 70 enzyme infusions. These treatments have been traumatic and painful, and yet he absolutely loves going to the hospital. This is truly a testament to the amazing nursing staff at this hospital. They go above and beyond to make sure he is comfortable and happy. They remember his birthday. They know what he likes to eat. They remember his favorite cartoon characters. They hug him. They truly give him CARE that goes beyond the medical sense of the word.
My giving story is about those strangers who heard about Sebastian and felt that he was worth saving. Strangers who reached out to us with words of encouragement and advice. Strangers who have fundraised for us, giving of themselves when they didn’t need to care. Although she will probably be embarrassed about this personal note, I feel that I must mention Katie who saw a few posts about our family on Facebook. After reaching out to me to express her desire to raise money on our behalf, she brought our story to her fellow Hollywood, FL Lions Club members. These remarkably serving (their motto is actually “We serve!”) individuals have become champions of our cause. I cannot express how truly grateful I am for their gift of COMPASSION.
My giving story is about the tireless efforts of friends and family members who continue to help motivate us. It’s easy to fall back into despair. Each time Sebastian is sick, it’s difficult not to wonder if our efforts are really worth the cost: are we sacrificing priceless time with our son for a future that will never be realized? I imagine it’s not easy to be our friends. We are incredibly busy, distracted, overwhelmed, emotional. Loving us means loving a beautiful little boy who will likely die in the not-so-distant future. We have little to give these days, and yet people have not given up on us. LOVE is an amazingly transformational gift.
My giving story is about others who have chosen to give. Our family was forced into this dark place, but others have willingly walked in to help us find a way out. Come what may, these individuals have revealed the beauty in the human heart.
We know our simple “thank you” can never compare to your heartfelt efforts, but it’s the best we have to give in return.
Written in support of Project Alive