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My sons, Wyatt and Wesley, are five years apart in age, but both were diagnosed at birth with a rare blood disorder, Hemophilia A. Now, as teenagers, they continue to be followed by their hematologist at Nationwide Children's Hospital, who monitors their frequency of bleeds and joint health.
Since Hemophiliacs often have bleeds associated with their joints, Wyatt and Wesley receive a special IV clotting drug, factor, via infusion therapy on a regular basis to keep any bleeds in check. The boys have also been patients of Nationwide Children's Hospital Homecare’s Infusion Pharmacy since birth, so the doctors, nurses, social worker and Homecare Infusion Pharmacy staff work as a team to coordinate their care. It's always a relief knowing we have a team of professionals there to help us. We greatly appreciate all they do.
We’re so proud of our boys! It’s wonderful watching them grow up, and lead active, successful lives. Wyatt, now 18 years old, enjoys photography, is interested in cars, and plays the guitar, piano, bass and other instruments. His younger brother Wesley likes swimming, bike riding, camping and fishing.
Our family is thankful for the Nationwide Children's Hospital Hemophilia staff and Homecare Infusion team who are always there to help us, and treat us like family.
Shortly after Owen's birth we began to notice that what we were reading in our "baby guidebooks" was nowhere near what we were experiencing with Owen. We endured seemingly endless rounds of high-pitched screaming with no source of comfort. Head control never came, nor did sitting, crawling, or putting any weight on his legs. At seven months of age Owen began to seize, countless uncontrollable seizures, which became his first of what would become hundreds of hospitalizations.
Owen was diagnosed with a rare brain malformation called polymicrogyria, and shortly thereafter he was diagnosed with a terminal variant of mitochondrial disease. We were told not to "chase any rainbows" looking for a cure for Owen because there wasn't one, and he wouldn't likely survive past the age of two.
Today Owen is six years old, plays adapted little league baseball, loves cartoons and books, and is in kindergarten at a local school for children with special needs. He has a quirky personality and he is a truly joyous child who is unaware that his life is any different than any of the other kids in his classroom. Currently, Owen relies upon advanced medical technologies for life support such as mechanical ventilation and feeding devices, adaptive mobility and seating equipment, and innovative therapy services.
He is alive and thriving today because of the experts at Nationwide Children's Hospital, and because we refuse to accept that there aren't rainbows to be chased. Since starting the Palliative Care Program, Owen has not been hospitalized in over a year. We are so thankful for programs like this that help us - as a family unit - manage the burdens that accompany terminal illness so that we can stay focused on creating memories and beautiful life experiences together outside of the constraints of the hospital environment. Owen is proof that miracles happen and that there is always hope even when a cure is beyond reach.