Riley's Story

Submitted By his mother, Lisa

Our son, Riley, was diagnosed in Oct. 2008 with a very rare genetic order called Hunter Syndrome (MPS II). It was nothing short of a miracle that we became aware of his condition. My sister-in-law was taking a class on biomedical disorders and was randomly assigned Hunter Syndrome to research. After reading about some of the symptoms (chronic ear infections, chronic runny nose, speech delay, large head) and seeing pictures of other kids with Hunter Syndrome she came to us with her concerns. We had a very sleepless night that night and called our pediatrician that next morning. He referred us to the Genetics Clinic at Children's. We were so very fortunate that a new geneticist had just come to Children's the week before. We met Dr. Murugu Manickam on Oct. 13 and he confirmed our worst fears that Riley did in fact have Hunter Syndrome. The syndrome is potentially life-threatening and affects every aspect of a child's body. He is missing a specific enzyme. Dr. Manickam developed such a wonderful rapport with both Riley and the whole family. He told us every step of what we needed to do next and helped get all of our appointments scheduled. On Dec. 22, 2008, Riley received his first infusion of a synthetic form of the enzyme his body is missing. He will continue to receive this infusion every week for the rest of his life. The nurses in the infusion clinic were also wonderful. They were so caring and understanding of Riley and his circumstances. Riley had surgery on 4/24/09 to have a port catheter and t-tubes placed. In addition to this, he also had several other procedures done (brain MRI, bronchoscopy, ABR, echocardiogram). It was amazing that they were able to coordinate all of this for the same date. Riley is doing very well, and his infusions have just become another part of his life. We were so blessed to have been connected to Dr. Manickam at Children's.

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