Kevin - BLIND, DEAF | Clearly hopeful at home

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About Kevin:

Born: 1998

Diagnosis:

CHARGE Syndrome, deaf, blind; Bleeding disorder; Immunosuppression

Challenge:

Keep Kevin infection-free

Solution:

Partnering with healthcare 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, Kev

in likely would not have lived; Now he lives as normal a life as possible with his family at home

"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 may 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

Twenty years into a life he wasn't expected to have

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.

Download Kevin's full case study PDF (0.78 MB PDF)