01/18/2024
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Please join us! We are honored to be a part of this amazing foundation Rhys Wesley Jinks was born on November 11, 2020.
It was known that Rhys would have Arthrogryposis prior to his birth and the doctors decided he should be delivered at Children’s Hospital of Philadelphia. Upon his birth he was put on a ventilator and admitted to the NICU before transferring to PCU.
Rhys stared having seizures and it was determined he had KCNQ2 seizures, a rare seizure disorder stemming from a mutation on his KCNQ2 gene. There are no FDA approved treatments for this specifically and the seizure medications on the market made the seizures hard to treat. Rhys also had increased difficulty with breathing and needed a tracheostomy.
Rhys underwent casting and orthopedic surgical procedures soon following his birth. He was a fighter and was able to be taken off the ventilator. Rhys loved to have stories read to him while in his bouncer and look at his fish tank on his crib. He watched the Phillies with dad, Kevin, listened to stories read by mom, Katelyn, and FaceTimed with his 3 siblings Zachary, Charlotte and Elinor.
Rhys was put on hospice care in October of 2021 after the seizure medications failed and all treatment options were exhausted. He passed away on November 30, 2021 after a long fought battle. Rhys was an organ donor and gave the gift of life to others. His memory is a blessing to us all and we strive to honor his light and spirit through this organization.