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Fitz #471

Fitz update (3)Fitz6-year-old boy  (pic in yellow from 2009)

update from March 2014:

He has been diagnosed with chromosomopathy –chromosome 4 short-arm deletion (Wolf-Hirschhorn syndrome); congenital eye anomaly – complete blindness of the right eye and partial blindness of the left eye; microcephalus; epilepsy treated with two anti-convulsion medications. Following the therapy, he has not had any seizures.

He is a bedridden child who turns his body sideways and crosses his legs. His legs do not support his body. He keeps his head upright when lifted from his bed. He cannot see, he does not follow objects with his eyes or look closely at them. He does not hold a toy that has been handed to him but he grabs hold of the bars of his crib.

This boy becomes still and smiles slightly when someone caresses his cheeks or speaks to him, in which case he listens intently, reacts to the sounds and trembles. He is calm and quiet in his time awake.

Update from June 2014. The boy is currently 6 years old. Despite his age, his development is greatly delayed in relation with his medical condition and diagnoses. He spends his time lying in a crib, in a room with two other bedridden children in very severe condition and one caregiver. He is currently placed in a hospital (part of the orphanage got transferred to a hospital and all their children who could benefit from constant medical attention are now placed there). He continues taking the two medications mentioned in his medical records for epilepsy. While there is some hope that some of the vision in his left eye might be preserved, according to the temporary substitute for the orphanage director, his hearing might be impaired as a result of neuritis.

He is still fed with a feeding tube and seems to accept food well as he has gained weight compared to the older photo of him and looks much heavier now. According to the orphanage, he gets some rehabilitation (a massage and respiratory gymnastics) every day from Monday to Friday.

He can now maintain a sitting position and the caregiver places him in a sitting position in his crib.

 

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