Deacon

Deacon, born January 2017, is a cheerful and loving little boy, who is often smiling! He interacts well with both children and adults and likes to give and receive hugs and kisses. He enjoys all kinds of play, especially musical activities, and his favorite toys include balls, cars, and blocks. Due to the pandemic he is receiving educational instruction at the orphanage. When he was found at one month old, Deacon was admitted to the hospital immediately due to sepsis. While there he was diagnosed with left club foot, malformative syndrome, and possible spina bifida occulta due to a pit on his sacrum. He began weekly casting for his club foot, then received a tenotomy in April 2017, and wore a harness to keep his feet in correct position. However, he needed casting again in 2020, and then began AFO therapy. Later he was diagnosed with dorsolumbar scoliosis and moderate bilateral hearing loss. Deacon is reported to be moderately delayed for his age, but at four years old has achieved many milestones! He can kick a ball, and go up and down stairs while supervised by an adult. He is able to build with blocks, scribble, shape play-dough, and hold a glass and a spoon to feed himself. He can communicate basic needs through short phrase such as “give me water” and “let’s go” and is reported to speak well. When presented with a picture he can identify elements by name, and recognizes several body parts and animals.

Deacon has seen many specialists, but has not received a conclusive diagnosis tying together his needs yet; they feel the most likely diagnosis is Klippel-Feil syndrome or Jarcho-Levin syndrome, but have also considered arthrogryposis and mucopolysaccharidosis. He needs a family open to his orthopedic needs who will get him the care and treatment he needs as he continues to grow!