Jacob Henry Bohley was born March 1, 2017. He is now a hysterical, sweet, loving 5 year old. Anyone who has ever met him knows the love he has for … Continued

Carter is a silly charming outgoing , smart 3 year old . She has lots of courage and strength! Almost always happy! She’ lives with mom dad and big brother and big sister !

Jaela was born with Mucopolysaccharidosis  (MPS) 1 also known as Hurler syndrome ,  a rare genetic disorder that affects many body systems that lead to organ damage. It is caused … Continued

This is Myles he has MPS-1 Hurler Syndrome-He is an energetic and curious little guy. His smile and laugh are contagious! With God all things are possible!- Matthew 19:26

Keller is a fun loving two year old little boy that loves his football team the Dallas Cowboys! He enjoys any sport that involves a ball, playing with race cars, and spending time with his sisters. It has been a long and arduous journey to get to a diagnosis, but now we can finally direct all our efforts to finding a cure and advocating for MPS.

Owen is a happy boy with a heart as big as the sky. He has a laugh that is so contagious and his brain is filled with pure innocence and curiosity. He makes you laugh and feel happy constantly and lives each day so simply, surrounded by the things and people he loves. The simple vision of life that he sees, we will try harder to see. The things he feels, we feel immensely , and wherever he goes, we will follow. He is our Hero.

This sweet little guy joined our family on January 25, 2018. His big sister was instantly enamored, and we were over the moon.

This courage page is for my son, Easton. Easton has encountered many obstacles since his birth on January 6th, 2017. He spent the first month of his life in the NICU, half of that time on a ventilator. He has since then had many procedures, tests, surgeries, hospitalizations, etc. On November 8th, 2017 when Easton was ten months old, we got the unfortunate diagnosis of MPS ll-Hunter Syndrome after his collaborative care team came together to find a diagnosis.

Faith Heard, 2 years old, is a beautiful miracle born at 27 weeks weighing just 770gm. After her 3.5 months of hospital stay due to her prematurity she was doing fairly well until September 29th when she got diagnosed with Hurler syndrome.

Welcome! My name is Xavier Cordell Patton and I have MPS II, also known as Hunter’s Syndrome. I’m two years old and I live in  Mississippi, The Hospitality State.  I was diagnosed with Hunter’s … Continued