My Son has Orofacial Granulates – A Father’s Story

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Kaine was diagnosed with Crohns at about six-years-of-age. Orofacial granulates is a form of Crohns disease which was confined to the mouth area, but has since advanced throughout our sons gastrointestinal system.

As Kaine suffers from cerebral palsy and epilepsy, we were not strangers to hospitals and managing what some may consider one of mans worst afflictions – cerebral palsy. Because of this condition, Kaine is paralysed down the entire left side of this body. However, both cerebral palsy and epilepsy pale into insignificance compared to Crohns disease and the major impact it has had on our family and way of life.

At its peak, Crohns disease required up to 40 days a year in hospital, either as appointments or inpatient admissions. Kaine has missed an extra 20-30 days of school, spending hours per day in sick bay. This has had a major affect on his education and consequently he has fallen behind greatly. As parents, we have also needed to use all our sick and holiday leave at work.

Crohns disease has robbed Kaine of several years of his childhood. He has been more like an 80-year-old man rather than a 10-year-old boy. He has been unable to play, kick a ball, ride a bike or even walk more than a hundred metres without requiring a rest. He carries a sick bag with him everywhere and spends several hours in the toilet per day.

Crohns is an insipid disease. It has slowly sucked the life out of our child. He has wasted away before our eyes.

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