HERE IS MY STORY

When Teagun was just 3 years old, he was diagnosed with mucopolysaccharidosis II (MPS II), also known as Hunter syndrome. This rare condition leads to excess build-up of harmful sugar molecules, ultimately interfering with development.

Upon his diagnosis in 2017, Teagun began receiving weekly infusions at Primary Children’s – a treatment that he will need each week for the rest of his life. For the first two years of these treatments, Teagun and his family drove four hours from Afton, Wyoming, to Primary Children’s in Salt Lake City, Utah.

And though the experience was overwhelming at first, Teagun’s mom, Josie, was grateful for the nurses and child life specialists who went above and beyond to make their time at the hospital extra special.

“Teagun received anything and everything he needed to stay entertained and comfortable during the 4.5-hour treatments – whether it be coloring books and movies or chocolate milk and scrambled eggs,” said Josie. “We cannot say enough good things about that department, and the amazing nurses who greeted us every Monday morning with a huge smile and whatever support we needed.”

Now, at almost 6 years old, Teagun is doing well and is receiving enzyme replacement treatments at home from a home healthcare provider. While there is currently no cure for Hunter syndrome, treatments like the one Teagun receives can help make the disease more manageable.

“Teagun is an amazing little boy,” said Josie. “I would tell any other family out there heading to Primary Children’s that they are in good hands. There is the most amazing staff there, who have the child’s best interest at heart. They will do whatever it takes to make you and your child comfortable.”

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Teagun