two brothers with hunter syndrome

Torbert Brothers: PJ, Pharoah and Pheelan

Age: 6, 4, & 6 mos.
Torbert Brothers: PJ, Pharoah and Pheelan's Family
Phillip Sr.
Pittsburgh, PA

Torbert Brothers: PJ, Pharoah and Pheelan's Story

I have three of the most amazing boys! These boys are always smiling and always happy. PJ loves to watch Moana and listen to Wheels on the Bus and If You’re Happy and You Know It. He loves jumping on his trampoline and cuddles and kisses from mommy & daddy. Pharaoh loves everything Disney. He can act out all his favorite Disney movies. Pharaoh has the best dance moves I have ever seen and has the cutest obsession with trucks. Pheelan, at only 6months old, has a huge personality. He loves to smile; he is hardly ever upset. He loves cuddles from mommy. Loves to try new foods and play with his brothers.

I lost my brothers to Hunter Syndrome. They were 11 and 14 years old so I always wanted boys, maybe I wanted a little piece of my brother’s back. When I found out I was having a boy, I was over the moon. I thought about how tall he would be, if he would play soccer or football. I thought about all his firsts. First school dance, first school crush. But unfortunately, at 2 years old my son was diagnosed with Hunter Syndrome and my world came crashing around me. Pharaoh was 4 months at the time PJ was diagnosed so they tested him too and the same gut punch all over again. No more hopes and dreams now, all you have is what is next. I researched tirelessly and packed up and moved my family to Pittsburgh to begin the fight of our lives. 4 years later we found out we were expecting another son and we thought maybe this is it, maybe our last boy will be born and all will be good. Unfortunately, at 2 weeks old, Pheelan was diagnosed with Hunter Syndrome. Our boys may not have the life I once dreamt about but that is okay. They bring so much love and light to everyone around you. My boys are completely nonverbal, but they can give you love, and they never have to say a word. You know their love has no boundaries, no conditions. The smiles, the laughter and the brightness in their eyes tell me everything their mouths could ever say. My boys and every single boy affected by Hunter Syndrome deserve a cure. Help us save them. Help us spread awareness and advocate! Their future should not just be a dream. Help us make their lives a reality.

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My boys and every single boy affected by Hunter Syndrome deserve a cure.

Daiza Gordon