Tanner

Tanner's Story

Tanner is not only a special guy, but also a miracle. He loves to play with his Dinosaurs, and enjoys anything Spiderman.  The one thing that Tanner will throw a fit about is when we have to get out of a pool, this boy would live in the water if it was his choice.  Tanner is very picky when It comes to food, he has to have cheese, so he eats a ton of grilled cheese or chicken nuggets. Another thing Tanner wants to do all the time is go outside, he has a swing set, sandbox, and will sit there for hours by himself and play.  Tanner has a one of a kind sense of humor, he is always laughing and giggling which becomes contagious.  When Tanner started school he became a leader, all the kids look to him to see what he does before making their own choice, when Tanner leaves a room he has made his mark on whomever is with him.

Tanner was diagnosed with Hunter syndrome before he was even born. His maternal uncle, Bradley Tanner, had Hunter syndrome which allowed for prenatal genetic testing. Thanks to early diagnosis, Tanner began enzyme replacement therapy at 15 days and received a Bone Marrow Transplant at 2 months old. While Tanner’s transplant has been successful, keeping many Hunter syndrome symptoms at bay, he still deals with a few cognitive delays.  Tanner has been a true fighter through it all, and goes into each appointment, or developmental class with a happy and excited personality. At almost 6 years old, he still has a long way to go. We are hopeful that one day he will begin to talk more on his own (without prompting), gain more words, and become more independent than he already is. 

But as a bereaved sister, I know all too well the devastating progression of Hunter syndrome. I watched my little brother rapidly lose skills as the neurological effects of Hunter syndrome took place. We don't know how well his bone marrow transplant will keep these neurological symptoms at bay. There isn't enough data available for long term outcomes for Hunter syndrome patients transplanted in infancy. We also don't want any other parents to have to make that unthinkable decision to choose transplant for treatment. It's painful, life threatening, and terrifying. We need a safe and effective treatment for Hunter syndrome because our kids deserve to have a chance to grow up. 

We hope that you will join us in supporting Project Alive's efforts to fund research, advocate for change, and provide invaluable resources to the Hunter syndrome community. Your support can help us save and change lives.