Photograph by Katie Hart (2018)

Only a few days after his birth, Ben received a tracheostomy (trach) or breathing tube and a gastrostomy tube (gtube) that delivers nutrition directly to the stomach. In addition to a cleft lip and palate, he was diagnosed with proximal femoral focal deficiency (PFFD). This is a complex birth defect where the upper part of the femur bone in the thigh is either malformed or missing, causing one leg to be shorter than the other. This difference causes functional problems with a child’s ability to walk and can stress other bones and joints in the body in an effort to compensate. Because of this, his parents were told that Ben would probably never walk nor be very mobile. Instead, his parents say he is into everything and gets around great. His trach was removed in July after jaw distraction surgery, and his cleft lip and palate were repaired. His favorite things are his mommy, daddy and chocolate lab Diesel, and he loves being outside and anything with wheels, especially Lightning McQueen. His parents hope their amazing little boy, who’s already had more than 10 surgeries in his short life and is still the happiest child ever, comes to know and understand that being different is okay. They know he is perfect in every way and will do great things.

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Family Connection of South Carolina provides services and resources to families who have a child with a disability or specialized healthcare need. Since 1990 we have served more than 100,000 families and today our services are needed more than ever. We focus on parent-to-parent support, guidance with navigating the complex healthcare system, and assistance with school meetings and special education plans.

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