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Advocate Spotlight: Jacob's Heart

by Joshua B. on Wednesday, September 11, 2013

Jacob's Heart, California

Nicole Dinubilo-Wells is the mother of twins—Julianna and Jacob—who were born five weeks early on June 3, 2004. Jacob Ryan Wells was born with a critical congenital heart defect (CCHD) called Hypoplastic Left Heart Syndrome. With this CCHD, the left side of Jake’s heart–including the aorta, aortic valve, left ventricle and mitral valve—was underdeveloped. Since birth, Jake went through six open-heart surgeries, a few medi-flight helicopter rides to Stanford, and a few other gastrointestinal surgeries, as well as surgeries that were not even FDA approved. According to Nicole, his little, brave life endured much triumph, pain, trials and struggles. Through it all, and during the long hospital stays, he had such a strong spirit, always having a smile on his face. He was the happiest little boy you could ever know, with only half a heart, his mom says.

Sadly, Jacob lost his battle to his heart disease on April 26, 2011, at the young age of six years old after having complications from another corrective heart surgery.

Since Jacob’s passing, Nicole has been an active supporter of the American Heart Association, raising funds for Heart Walk and sharing her son’s story to help pass pulse ox legislation in California. She and Jacob’s father, Bryan, have been involved with the San Joaquin Heart Walk since 2011 and formed the team “Jacob’s Heart” in his memory.

Jacob was such a true inspiration to so many people and touched so many hearts during his short little life,” said Nicole. “My intent is to keep Jacob’s memory alive and make ‘Jacob’s Heart’ a recognizable icon in our community. My hope is that being involved in raising funds for the American Heart Association will help make a difference.”

To help with fundraising efforts, Nicole recently held a shrimp feed at the Italian Athletic Club and the second annual Jacob’s Heart memorial bowling tournament at Pacific Avenue Bowl while Bryan held the second annual Jacob’s Heart memorial golf tournament at the Elkhorn Golf Club, all of which they said were great successes. So far, their combined efforts have raised over $15,000 for this year’s Heart Walk.

My son Jacob had such a huge spirit which has impacted me and so many others,” said Bryan. “I am honored to keep his memory alive by raising money for the American Heart Association. I know he is looking down on us and smiling.”

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