BiographyToby had a complicated birth, requiring assistance due to a short umbilical cord that snapped when he was pulled. He was blue and floppy.
He spent 3 days in the neonatal unit where it was discovered he had bilateral cataracts. These were removed separately at 6 and 8 weeks respectively. At the same point, a biopsy confirmed Toby had Lowe Syndrome.
Toby then developed glaucoma, which he required another surgery for. He is now on medicated eyedrops to manage this. For a number of years Toby wore glasses. He now wears contact lenses but still has poor vision. In time he will be apparently required to wear glasses and contacts to account for both near and far sight purposes. Further operations are expected on his eyes, eventually.
Occupational therapy and physiotherapy were visiting Toby twice a week until he started preschool at the special needs school he is still at now. These factors are now mostly managed in the school.
Toby has ongoing appointments with specialists at the hospital, both with the pediatric nephrologist, and the pediatric optometrist.
Toby is happy at his special needs school, and is usually happy enough in himself. However, Toby's resulting autism created a number of challenging behaviours.
Recently, he was diagnosed with epilepsy, after suffering several minor seizures followed by a severe one which saw him hospitalised for a few days. The medication he is now taking to manage this has altered his personality in such a way that he has become aggressive towards us, physically injuring us. His doctor is in the process of changing this medication over, as we hope this will resolve things.
Toby is unable to communicate and cannot walk, but he makes himself understood in other ways.
|
