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Noah is such a joy. He is unique and loving and his personality shines bright in every room. We love to take him to concerts and on vacation with us. He enjoys the beach and sitting out under the stars at night. PKS shows up differently in each child. It has given Noah some mobility and developmental challenges. He also uses a communication device to share his wishes and desires with us. We have a supportive community who love Noah and always include him in anything they do. With less than 500 diagnosed cases of PKS, we never know what to expect. We help the doctors and nurses learn and we teach them about Noah with every visit. I hope that our experiences help make the path easier for others in the future.
