Michael Connoway - Marble Bone Patient
- By: Susan Connoway
- Short URL: https://www.backabuddy.co.za/marble-bone-patient
Michael Connoway, a teenager who has undergone 15 operations as a Marble Bone (Sclerosteosis: Rare Bone Disease) patient. See Facebook Page Michael Connoway's Journey for more information.
The disease causes the bones in his scull to continue growing which eventually results that his brain does not have enough space. In 2016 his scull was so thick and his brain started pushing down his spine. He struggled to breath and had an emergency operation where his scull was removed and thinned.
Both his ear canals have grown closed and he has permanently lost all hearing in both ears. He urgently requires a hearing aid for the left ear.
He has suffered facial paralysis on the right side which only recovered 90 %. He has just undergone decompression of the facial nerve on the left side of his face. Our hospital plan only covered a portion of the bills and there is an amount of R135.000 unpaid.
Another scull operation would be required quite soon.
Michael is one of 33 marble bone patients in South Africa. Regular monitoring and scans are required to ensure early prevention. Without this he could be blinded, paralysed, or even die. None of these expenses are covered by our medical aid.
Michael is an extra-ordinary son and an inspiration to every person he meets. He is a living miracle of God. We are trying to care for our child to the best of our ability, but our medical expenses are astronomical and increasing all the time.