Riley’s Story

Riley has presence. When you meet him you immediately find yourself smiling and wanting to ask him, “… and then what will we do?”  When you meet him, it’s really hard to believe that he is battling a life-limiting illness.

When Riley was only three years old, he was diagnosed at Nationwide Children’s with a rare and progressive genetic disorder called Mucopolysaccharidosis Type II (MPS II). At the time of his diagnosis, his parents were not sure what MPS was, or what it meant for Riley. But the genetics team at Nationwide Children’s helped them to understand what MPSII is and also helped them to make some difficult decisions about his treatment.

“MPS II is caused by a defect in the gene that tells the body to make an enzyme called iduronate-2-sulfatase.  The absence of this enzyme causes cell waste to build up throughout the body.  This leads to damage in many body systems and organs.  Buildup interferes with how cells normally work and causes damage that gets worse over time,” shares Riley’s mom, Lisa.

There is no cure at this time for MPS II. Riley receives a weekly, 3 ½ hour long enzyme infusion that has helped slow down the progression of the disease, but he continues to face many challenges and struggles.  Since Riley’s initial diagnosis, his disorder has continued to progress.  And through it all, the team of experts at Nationwide Children’s has been by his side including Dr. McBride and Dr. Manickam in Molecular and Human Genetics; Dr. Wiet in the Ear, Nose and Throat Department; Dr. Feltes in Cardiology, and more. Riley has undergone multiple surgeries. He is receiving growth hormone therapy to help with his short stature, a symptom of MPS II.  He also has a compromised airway as a result of MPS II.  He receives speech, occupational, and physical therapies.  While Riley has not shown signs of cognitive regression, which is common with MPS II, he does have developmental delays, and challenges with learning and with social situations.

“Nationwide Children’s Hospital means hope…hope for Riley and his future.  Not only has Riley gotten amazing care since his diagnosis, but right now there are doctors at NCH who are researching gene therapy for MPS II.  This is the closest hope we have to a cure for Riley,” says Lisa.

Riley faces it all with strength and courage… and playfulness. He loves Mario. He also loves putting on his cowboy boots and going to his horseback riding lessons. And he loves his friends and makes plans for play dates, wanting to include everyone.  He recently began participating in Special Olympics – his favorite sport being track. There is no doubt with his love for running, and his strong presence, that Riley will be a true inspiration for the participants who pass through his mile  during the Nationwide Children’s Hospital Columbus Marathon & ½ Marathon.

Run Fast for Riley

 

Join Run Fast For Riley, Riley’s team for the Nationwide Children’s Hospital Columbus Marathon & 1/2 Marathon. Follow their Facebook page here.

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Riley has presence. When you meet him you immediately find yourself smiling and wanting to ask him, “… and then what will we do?”  When you meet him, it’s really hard to believe that he is battling a life-limiting illness.

When Riley was only three years old, he was diagnosed at Nationwide Children’s with a rare and progressive genetic disorder called Mucopolysaccharidosis Type II (MPS II). At the time of his diagnosis, his parents were not sure what MPS was, or what it meant for Riley. But the genetics team at Nationwide Children’s helped them to understand what MPSII is and also helped them to make some difficult decisions about his treatment.

“MPS II is caused by a defect in the gene that tells the body to make an enzyme called iduronate-2-sulfatase.  The absence of this enzyme causes cell waste to build up throughout the body.  This leads to damage in many body systems and organs.  Buildup interferes with how cells normally work and causes damage that gets worse over time,” shares Riley’s mom, Lisa.

There is no cure at this time for MPS II. Riley receives a weekly, 3 ½ hour long enzyme infusion that has helped slow down the progression of the disease, but he continues to face many challenges and struggles.  Since Riley’s initial diagnosis, his disorder has continued to progress.  And through it all, the team of experts at Nationwide Children’s has been by his side including Dr. McBride and Dr. Manickam in Molecular and Human Genetics; Dr. Wiet in the Ear, Nose and Throat Department; Dr. Feltes in Cardiology, and more. Riley has undergone multiple surgeries. He is receiving growth hormone therapy to help with his short stature, a symptom of MPS II.  He also has a compromised airway as a result of MPS II.  He receives speech, occupational, and physical therapies.  While Riley has not shown signs of cognitive regression, which is common with MPS II, he does have developmental delays, and challenges with learning and with social situations.

“Nationwide Children’s Hospital means hope…hope for Riley and his future.  Not only has Riley gotten amazing care since his diagnosis, but right now there are doctors at NCH who are researching gene therapy for MPS II.  This is the closest hope we have to a cure for Riley,” says Lisa.

Riley faces it all with strength and courage… and playfulness. He loves Mario. He also loves putting on his cowboy boots and going to his horseback riding lessons. And he loves his friends and makes plans for play dates, wanting to include everyone.  He recently began participating in Special Olympics – his favorite sport being track. There is no doubt with his love for running, and his strong presence, that Riley will be a true inspiration for the participants who pass through his mile  during the Nationwide Children’s Hospital Columbus Marathon & ½ Marathon.

Run Fast for Riley

 

Join Run Fast For Riley, Riley’s team for the Nationwide Children’s Hospital Columbus Marathon & 1/2 Marathon. Follow their Facebook page here.

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