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Michael Connoway - Marble Bone Patient

Michael Connoway - Marble Bone Patient

Personal message

Michael Connoway, a teenager who has undergone 16 operations as a Marble Bone (Sclerosteosis: Rare Bone Disease) patient. See Facebook Page Michael Connoway's Journey for more information.

The disease causes his bones, mainly 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 had grown closed and he permanently lost all hearing in both ears. 

He has suffered facial paralysis on the right side which only recovered 90%. 

Major scull surgery is scheduled for 19 August 2019 in Pretoria in Gauteng (we are based in the Western Cape).  

He also needs an operation to preserve his ear nerve to enable him to hear with a hearing aid, and jaw surgery and braces.

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.  Our medical bills, not covered by the medical aid, for the last 3 years amounted to R700.000.

Michael is an extra-ordinary young man 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. 

 

Donations

  • Aug 07, 2019 - R 110.00
  • "Good luck " - Anonymous

  • Aug 06, 2019 - R 514.10
  • "Wishing you a full recovery and a wonderful year ahead of you. This donation is also in memory to my Brother and my Mom's son who we loved endlessly..good luck to you????" - Anonymous

  • Aug 06, 2019 - R 200.00
  • "Praying for a miracle recovery " - Anon

  • Aug 06, 2019 - R 110.00
  • "Dink aan julle in hierdie moeilike tyd. Stuur asb baie liefde vir hom. Sal hard bid dat hy gou weer homself is" - Suzette

  • Aug 06, 2019 - R 507.50
  • "Sterkte Michael! Jy is in ons gebede! Xxx" - Anonymous

  • Aug 04, 2019 - R 514.10
  • "Sterkte met die lang, moeilike pad. Mag God julle dra, ek weet dis swaar, druk net deur en wees sterk. Groete een van die 33." - Ingrid Faasen

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Statistics

Donations to date

R 1 955.70

Fundraising target

R 100 000.00
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Michael Connoway - Marble Bone Patient

Michael Connoway - Marble Bone Patient Logo

Michael Connoway, a teenager who has undergone 15 operations as a Marblebone (Sclerosteosis: Rare Bone Disease) patient. 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.