Blake Daniel Wright

Blake Daniel Wright, our most treasured baby boy, was born in Salt Lake City, Utah, and from the beginning, he was a fighter. He came into this world with a strength and determination that would define so much of his beautiful life. Blake faced more than any child ever should, yet he continued to amaze us with his courage, his resilience, and his incredible will to live life on his own terms. 

At 12 years old, our sweet Blakey took his last breath cradled in his daddy’s arms in his favorite spot in the house. Although our hearts are absolutely devastated and shattered beyond words, we are grateful that he was surrounded by love until his very last moment. He left this world with a literal smile on his face. 

A year after Blake was born, he was diagnosed with Joubert Syndrome, a rare genetic disorder that would bring many challenges throughout his life. His childhood included countless therapies, doctor appointments, lab draws, procedures and more medical challenges than any child should ever have to endure. Through it all, Blake continued to fight. He never let the many challenges he faced define who he was.

 Blake was so much more than his diagnosis. He was our sweet, funny, strong-willed boy who had his own special way of making sure everyone knew he was there. His genuine love and adoration, his amazing hugs and snuggles with his favorite people, and his sweet, unforgettable spirit will be greatly missed. He loved watching Mickey Mouse Clubhouse, listening to his favorite music, and opening and closing doors over and over again. He always wanted to know everything that was happening around him. Blake was also the undisputed boss of the house. He knew what he wanted, who he wanted and when he wanted something and he had no problem making sure everyone else knew it too. 

His big, beautiful belly laugh was truly the absolute best. It was the kind of laugh that filled the room, made everyone around him smile, and reminded us just how much joy one little boy could bring into our lives. 

His personality, his little routines, his determination, and his genuine love for his favorite people will be missed every single day forever. He had a variety of nicknames; Bubsy, Blakey, Goobie, Bubsalicious, Bubs and more. He answered to every single one and loved them all. Even though he was non-verbal, he communicated his wants and needs and most importantly, he showed us just how much he loved us without having to verbally tell us.

He is survived by his loving parents, Cody and Heather Wright; his siblings, Adelynn, Colter and Zac Wright; his grandparents, Dan and Dona Lobes and Crystal Wright; his aunts, Kelly (Casey), Kami (Darren), and Julie; his uncle, Dee (Allison) and so many cousins who adored him and will carry his memory in their hearts forever. 

He was preceded in death by his loving grandpa, Lawrence Ray Wright. 

Among those who loved him most was his cousin Saige, (Saigey) who was so much more than a cousin. She was his babysitter, caregiver, and comfort.. Saige adored him deeply and Blake absolutely adored her as well. She gave him so much of her time, patience, laughter, and love. Their bond was incredibly special and the love they shared will forever be a beautiful part of his story. 

Blake was surrounded by an incredible village of doctors, therapists, teachers and para professionals who loved him dearly. They saw beyond his challenges and got to know the amazing little boy underneath them. They celebrated every milestone, cheered him on through every challenge and loved Blake for exactly who he was. We will forever be grateful for each person who poured their heart into caring for our boy and became a part of his life. 

At the family’s request, there will be no formal services at this time. Those who wish to honor Blake’s memory may do so by making a donation in his name to the Joubert Syndrome Foundation, helping support other families with children or adults affected by Joubert Syndrome.  The offical website is JSRDF.org