Meet Our Patients
Kevin:
Blind, Deaf | Clearly Hopeful at Home
Twenty years into a life he wasn't expected to live
Newborn Kevin's future was very grim. He was born with CHARGE Syndrome, an extremely complex condition, and was not expected to live to his first birthday. Kevin came to live with the Smith family in 1992 for short-term respite care. PHS was there right away and has been there ever since.
Avoiding risks of hospitalization
Over the years, Kevin has received nearly every type of PHS care. Kevin is MRSA-positive and suffers from immunosuppression, so he can't fight off even small infections. Receiving intravenous immunoglobulin infusions (IVIG) was necessary but increased his risk of infection. PHS helped keep Kevin out of the hospital. PHS also transitioned him to subcutaneous infusions (SQIG) to reduce the risk of infection.
Kevin loves living
Today, at age 20, Kevin is still a member of the Smith household, and he has attained a quality of life few thought possible. He has some schooling, goes on family outings, likes to eat and cook, and communicates with sign language. Seeing Kevin make a smoothie, bake cookies or draw a snowman, one sees how much he loves living.
Born:
1998
Diagnosis:
CHARGE Syndrome, deaf, blind; bleeding disorder; immunosuppression
Challenge:
Keeping Kevin infection free
Solution:
Partnering with health care professionals, PHS transitioned Kevin to feedings with less risk of infection and adjusted his formula and supplements for better vitamin intake
Result:
Without PHS's multidisciplinary care, Kevin likely would not have survived. Now he lives as normal a life as possible, at home with his family
"PHS was the one constant in our lives. Kevin was so sick and fragile, doctors said if he required hospitalization, he was at risk of infection and they might not be able to save him. Time and time again, PHS helped us keep Kevin home, safe, and alive. He is a gift we've been able to keep because of what PHS gave us." -Susan Smith, Kevin's mom and PHS client
