Now 6 years old, Jacob loves doing all he can to raise awareness for his syndrome and childhood cancer. Even today, he is always smiling and giving hugs, even to complete strangers. He has no fear and if any music begins to play within range he stops to dance his heart out! He has been such a trooper, even after having macroglossia and needing tongue-reduction surgery. His love for life fills the room and he brings a smile to everyone who is around him.
Jacob was born with Beckwith-Wiedemann Syndrome (BWS), a rare overgrowth disorder that causes a predisposition for childhood cancer. He visits the oncologist every 6 weeks for cancer screenings and check-ups, blood draws and ultrasounds to look for Wilm’s tumor and hepatoblastoma.
Like every parent, Jacobs’ parents want to watch Jacob grow up healthy, happy, and strong. They hate seeing him go through all the struggles life has thrown at him, and hope that he will never lose his amazing smile.
Jacob’s mom’s advice to others facing BWS is know the journey will be difficult but always remember to smile and laugh through the storms; take pictures to keep the memories alive, both of sad and happy times; and reach out to others for support. One day you will be able to provide help and support to another family going through the same struggles, and at that moment, you will think back and know that maybe some good can come from a multitude of heartache.
Alex's Lemonade Stand is important to Jacob’s family because of its support of Dr. Kalish, who is dedicating her time to study Beckwith-Wiedemann Syndrome. Jacob's parents hope that by sharing his story they can encourage another family to know hope, and that there is a life beyond cancer.
Information provided by Jennifer Wesselink, Jacob’s mom