Michael Connoway's Journey

30/12/2025

Michael Connoway Happy Birthday! 24!!

I am so very proud of the young man you have become. You have endured so much but continues to be an inspiration to everyone around you. You have comforted me when I should have been the one comforting you. Thank you for being there for me through all the difficult times. You are my hero ❤️.

Jer 29v11. I know God has great plans for you and cannot wait to see what the future holds for you.

Robyn Du Preez Michael could not have chosen a better wife. Thank you for who you are and for being part of our lives.

I love you both to the moon and back ♥️

26/11/2024

Sharing some very good news! 🙌🏻🙌🏻 Both CT and MRI scans done yesterday showed no signs of bone growth or thickening of the scull. The sizes of the ventricles are still slightly larger than it should be, but no bigger than last year. No sign of any tumors. Most importantly, the brain has sufficient space!
Eleven extremely difficult years since Michael was diagnosed. We will still have to scan regularly, but it seems that his growth has finally stabilised. We are so proud of Michael who just kept on going, being an inspiration to us when we struggled to stay strong. We have so much to be thankful for🙏🏻🙏🏻

04/07/2024

On 9 July it will be one year after Michael's first life-altering brain operation. We are thankful for his miraculous recovery so far - the prognosis was that the paralysis and brain damage could take up to 5 years to recover. His left hand sometimes still does not co-operate as it should. He had a lung x-ray last month and his lungs are back to normal. He also had a hearing test on Monday this week. The hearing in his left ear is more or less the same, but the hearing in the right ear has deteriorated a bit more. His short term memory is much better but not 100% there yet. He has an appointment for a follow up neuropsychological assessment next week to determine if he is ready to proceed with his studies. Please keep on praying.🙏🏻

22/05/2024

18 May 2024. Congratulations to a beautiful couple!

Michael, you deserve a life full of happiness.

Mrs Robyn Connoway, welcome to our family. Thank you for making Michael happy, the sunshine in his life. You looked absolutely stunning!

May your journey together be filled with love and laughter. May the Lord bless you and keep you and shine His face upon you, always.

29/02/2024

🤗𝐓𝐨𝐝𝐚𝐲 𝐢𝐬 𝐭𝐡𝐞 𝐝𝐚𝐲! Today is 𝐑𝐚𝐫𝐞 𝐃𝐢𝐬𝐞𝐚𝐬𝐞 𝐃𝐚𝐲 and we are very excited to launch our 𝙫𝙚𝙧𝙮 𝙛𝙞𝙧𝙨𝙩 𝙛𝙪𝙣𝙙𝙧𝙖𝙞𝙨𝙚𝙧 𝙥𝙧𝙤𝙙𝙪𝙘𝙩!
💚𝐎𝐮𝐫 𝐯𝐞𝐫𝐲 𝐨𝐰𝐧 𝐑𝐚𝐫𝐞 𝐁𝐨𝐧𝐞 𝐃𝐢𝐬𝐞𝐚𝐬𝐞 𝐅𝐨𝐮𝐧𝐝𝐚𝐭𝐢𝐨𝐧 𝐡𝐢𝐠𝐡-𝐪𝐮𝐚𝐥𝐢𝐭𝐲 𝐡𝐨𝐭&𝐜𝐨𝐥𝐝 𝐟𝐥𝐚𝐬𝐤 𝐢𝐧 𝐰𝐡𝐢𝐭𝐞 𝐨𝐫 𝐠𝐫𝐞𝐞𝐧, 𝐬𝐩𝐞𝐜𝐢𝐚𝐥𝐥𝐲 𝐛𝐫𝐚𝐧𝐝𝐞𝐝 𝐰𝐢𝐭𝐡 𝐚 𝐯𝐞𝐫𝐲 𝐫𝐚𝐫𝐞 😉𝐬𝐢𝐥𝐯𝐞𝐫 𝐑𝐚𝐫𝐞 𝐁𝐨𝐧𝐞 𝐃𝐢𝐬𝐞𝐚𝐬𝐞 𝐅𝐨𝐮𝐧𝐝𝐚𝐭𝐢𝐨𝐧 𝐥𝐨𝐠𝐨.💚

💚This campaign aims to 𝐫𝐚𝐢𝐬𝐞 𝐚𝐰𝐚𝐫𝐞𝐧𝐞𝐬𝐬 in Rare Disease Month about 𝐒𝐂𝐋𝐄𝐑𝐎𝐒𝐓𝐄𝐎𝐒𝐈𝐒, a very rare bone condition, as well as highlight the Rare Bone Disease Foundation's efforts to fulfil its purpose, which is to:
𝐏𝐫𝐨𝐯𝐢𝐝𝐞 𝐒𝐜𝐥𝐞𝐫𝐨𝐬𝐭𝐞𝐨𝐬𝐢𝐬 𝐩𝐚𝐭𝐢𝐞𝐧𝐭 𝐬𝐮𝐩𝐩𝐨𝐫𝐭;
𝐏𝐫𝐨𝐦𝐨𝐭𝐞 𝐞𝐝𝐮𝐜𝐚𝐭𝐢𝐨𝐧 𝐚𝐧𝐝 𝐫𝐚𝐢𝐬𝐞 𝐚𝐰𝐚𝐫𝐞𝐧𝐞𝐬𝐬 𝐚𝐛𝐨𝐮𝐭 𝐒𝐜𝐥𝐞𝐫𝐨𝐬𝐭𝐞𝐨𝐬𝐢𝐬; 𝐎𝐟𝐟𝐞𝐫 𝐬𝐮𝐩𝐩𝐨𝐫𝐭 𝐟𝐨𝐫 𝐒𝐜𝐥𝐞𝐫𝐨𝐬𝐭𝐞𝐨𝐬𝐢𝐬 𝐫𝐞𝐬𝐞𝐚𝐫𝐜𝐡 𝐚𝐧𝐝 𝐫𝐞𝐥𝐚𝐭𝐞𝐝 𝐢𝐧𝐢𝐭𝐢𝐚𝐭𝐢𝐯𝐞𝐬.

The flasks will be 𝐚𝐯𝐚𝐢𝐥𝐚𝐛𝐥𝐞 𝐭𝐨 𝐨𝐫𝐝𝐞𝐫 𝐟𝐫𝐨𝐦 𝐀𝐩𝐫𝐢𝐥 𝟐𝟎𝟐𝟒 at R325 per flask. 𝐓𝐨 𝐦𝐚𝐤𝐞 𝐢𝐭 𝐞𝐱𝐭𝐫𝐚 𝐬𝐩𝐞𝐜𝐢𝐚𝐥, you can request to add your name, or the name of a loved one, on the flask for an extra R25. Make sure to order in bulk... Trust us, you'll want to stock up, because once you experience the quality of these flasks, you won't want to be without it anywhere!

💚We would like to thank one of our RBDF family moms, Liezl Badenhorst, for the initiative, as well as her effort to make this project a reality.

Follow this page to stay informed on the progress of our newly created RBDF website (coming soon!) where you will be able to place your order in April 2024.

(Please note that postage is not included in orders, but the postage amount will be available on the website once the ordering system is live).



💚𝐖𝐡𝐚𝐭 𝐢𝐬 𝐒𝐜𝐥𝐞𝐫𝐨𝐬𝐭𝐞𝐨𝐬𝐢𝐬?💚
𝐒𝐜𝐥𝐞𝐫𝐨𝐬𝐭𝐞𝐨𝐬𝐢𝐬 𝐢𝐬 𝐚 𝐫𝐚𝐫𝐞 𝐚𝐮𝐭𝐨𝐬𝐨𝐦𝐚𝐥 𝐫𝐞𝐜𝐞𝐬𝐬𝐢𝐯𝐞 𝐠𝐞𝐧𝐞𝐭𝐢𝐜 𝐝𝐢𝐬𝐨𝐫𝐝𝐞𝐫, 𝐚 𝐝𝐞𝐛𝐢𝐥𝐢𝐭𝐚𝐭𝐢𝐧𝐠 𝐜𝐨𝐧𝐝𝐢𝐭𝐢𝐨𝐧 𝐭𝐡𝐚𝐭 𝐢𝐫𝐫𝐞𝐯𝐨𝐜𝐚𝐛𝐥𝐲 𝐚𝐥𝐭𝐞𝐫𝐬 𝐭𝐡𝐞 𝐥𝐢𝐯𝐞𝐬 𝐨𝐟 𝐭𝐡𝐞 𝐩𝐞𝐨𝐩𝐥𝐞 𝐰𝐡𝐨 𝐡𝐚𝐯𝐞 𝐢𝐭, 𝐚𝐬 𝐰𝐞𝐥𝐥 𝐚𝐬 𝐭𝐡𝐞𝐢𝐫 𝐟𝐚𝐦𝐢𝐥𝐢𝐞𝐬. 𝐓𝐡𝐞 𝐜𝐥𝐢𝐧𝐢𝐜𝐚𝐥 𝐟𝐞𝐚𝐭𝐮𝐫𝐞𝐬 𝐚𝐫𝐞 𝐮𝐧𝐜𝐨𝐧𝐭𝐫𝐨𝐥𝐥𝐞𝐝 𝐛𝐨𝐧𝐞 𝐟𝐨𝐫𝐦𝐚𝐭𝐢𝐨𝐧 𝐭𝐡𝐚𝐭 𝐥𝐞𝐚𝐝𝐬 𝐭𝐨 𝐭𝐡𝐢𝐜𝐤𝐞𝐧𝐢𝐧𝐠 𝐚𝐧𝐝 𝐬𝐜𝐥𝐞𝐫𝐨𝐬𝐢𝐬 (𝐡𝐚𝐫𝐝𝐞𝐧𝐢𝐧𝐠) 𝐨𝐟 𝐭𝐡𝐞 𝐬𝐤𝐞𝐥𝐞𝐭𝐨𝐧, 𝐢𝐧𝐜𝐥𝐮𝐝𝐢𝐧𝐠 𝐭𝐡𝐞 𝐬𝐤𝐮𝐥𝐥, 𝐫𝐞𝐬𝐮𝐥𝐭𝐢𝐧𝐠 𝐢𝐧 𝐰𝐢𝐝𝐞𝐧𝐢𝐧𝐠 𝐨𝐟 𝐭𝐡𝐞 𝐣𝐚𝐰, 𝐝𝐢𝐬𝐭𝐨𝐫𝐭𝐢𝐨𝐧 𝐨𝐟 𝐭𝐡𝐞 𝐟𝐚𝐜𝐞, 𝐠𝐢𝐠𝐚𝐧𝐭𝐢𝐬𝐦 𝐚𝐧𝐝 𝐞𝐧𝐭𝐫𝐚𝐩𝐦𝐞𝐧𝐭 𝐨𝐟 𝐭𝐡𝐞 𝐜𝐫𝐚𝐧𝐢𝐚𝐥 𝐧𝐞𝐫𝐯𝐞𝐬 𝐚𝐬 𝐰𝐞𝐥𝐥 𝐚𝐬 𝐬𝐩𝐢𝐧𝐚𝐥 𝐧𝐞𝐫𝐯𝐞𝐬 𝐰𝐢𝐭𝐡 𝐜𝐨𝐧𝐬𝐞𝐪𝐮𝐞𝐧𝐭𝐢𝐚𝐥 𝐫𝐞𝐜𝐮𝐫𝐫𝐢𝐧𝐠 𝐟𝐚𝐜𝐢𝐚𝐥 𝐩𝐚𝐫𝐚𝐥𝐲𝐬𝐢𝐬, 𝐡𝐞𝐚𝐫𝐢𝐧𝐠 𝐥𝐨𝐬𝐬, 𝐥𝐨𝐬𝐬 𝐨𝐟 𝐬𝐦𝐞𝐥𝐥 𝐚𝐧𝐝 𝐬𝐞𝐯𝐞𝐫𝐞 𝐡𝐞𝐚𝐝𝐚𝐜𝐡𝐞 𝐚𝐧𝐝 𝐛𝐚𝐜𝐤 𝐩𝐚𝐢𝐧. 𝐓𝐡𝐞 𝐦𝐨𝐬𝐭 𝐝𝐚𝐧𝐠𝐞𝐫𝐨𝐮𝐬 𝐟𝐞𝐚𝐭𝐮𝐫𝐞 𝐢𝐬 𝐫𝐚𝐢𝐬𝐞𝐝 𝐜𝐫𝐚𝐧𝐢𝐚𝐥 𝐩𝐫𝐞𝐬𝐬𝐮𝐫𝐞 𝐭𝐡𝐚𝐭 𝐜𝐚𝐧 𝐥𝐞𝐚𝐝 𝐭𝐨 𝐬𝐮𝐝𝐝𝐞𝐧 𝐝𝐞𝐚𝐭𝐡 𝐝𝐮𝐞 𝐭𝐨 𝐢𝐦𝐩𝐚𝐜𝐭𝐢𝐨𝐧 𝐨𝐟 𝐭𝐡𝐞 𝐛𝐫𝐚𝐢𝐧 𝐬𝐭𝐞𝐦 𝐢𝐧 𝐭𝐡𝐞 𝐟𝐨𝐫𝐚𝐦𝐞𝐧 𝐦𝐚𝐠𝐧𝐮𝐦. 𝐑𝐚𝐫𝐞 𝐃𝐢𝐬𝐞𝐚𝐬𝐞 𝐃𝐚𝐲 𝐢𝐬 𝐚𝐧 𝐚𝐰𝐚𝐫𝐞𝐧𝐞𝐬𝐬 𝐞𝐯𝐞𝐧𝐭 𝐨𝐧 𝐭𝐡𝐞 𝐥𝐚𝐬𝐭 𝐝𝐚𝐲 𝐨𝐟 𝐅𝐞𝐛𝐫𝐮𝐚𝐫𝐲 𝐞𝐚𝐜𝐡 𝐲𝐞𝐚𝐫. 𝐈𝐭'𝐬 𝐚 𝐝𝐚𝐲 𝐭𝐨 𝐫𝐚𝐢𝐬𝐞 𝐚𝐰𝐚𝐫𝐞𝐧𝐞𝐬𝐬 𝐚𝐛𝐨𝐮𝐭 𝐫𝐚𝐫𝐞 𝐝𝐢𝐬𝐞𝐚𝐬𝐞𝐬, 𝐢𝐦𝐩𝐫𝐨𝐯𝐞 𝐚𝐜𝐜𝐞𝐬𝐬 𝐭𝐨 𝐭𝐫𝐞𝐚𝐭𝐦𝐞𝐧𝐭, 𝐚𝐧𝐝 𝐢𝐧𝐜𝐫𝐞𝐚𝐬𝐞 𝐦𝐞𝐝𝐢𝐜𝐚𝐥 𝐫𝐞𝐩𝐫𝐞𝐬𝐞𝐧𝐭𝐚𝐭𝐢𝐨𝐧 𝐟𝐨𝐫 𝐩𝐞𝐨𝐩𝐥𝐞 𝐰𝐢𝐭𝐡 𝐫𝐚𝐫𝐞 𝐝𝐢𝐬𝐞𝐚𝐬𝐞𝐬 𝐚𝐧𝐝 𝐭𝐡𝐞𝐢𝐫 𝐟𝐚𝐦𝐢𝐥𝐢𝐞𝐬.

Sclerosteosis Symptoms might include:
- Facial Paralysis (once/multiple times during childhood; sometimes at birth)
- Syndactyly
- Gradual hearing loss.

💚𝐑𝐚𝐫𝐞 𝐃𝐢𝐬𝐞𝐚𝐬𝐞 𝐃𝐚𝐲 is an awareness event on the last day of February each year. It's a day to raise awareness about rare diseases, improve access to treatment, and increase medical representation for people with rare diseases and their families.

02/02/2024

The MRI was done last week and the feedback from the neurosurgeons took a lot longer than what we are used to, a bit nerve-wrecking. We have not had any feedback from Dr Tromp from CT yet, but I had a long chat with Dr Du Plessis from PTA - Michael's neurosurgeon since 2016. And all GOOD NEWS! 🙌🏻🙌🏻
This message might turn out to be very long, but we have to share the magnitude of the miracle that has happened!
Michael was diagnosed with a bone condition at the age of 13 - much later than usual - and he had a particularly aggressive type of Sclerosteosis. Amongst other things, he has lost his hearing, has had facial paralysis twice, permanent pain from pressure on the brain as the brain thickens to the inside with the result that the brain does not have enough space. To create more space for the brain, the scull is taken off in three sections = 3 craniotomies, thinned and replaced. Each section is usually only done once.
The tumor discovered in June 2023 is unrelated to his bone condition and can happen to anyone. The permanent intracranial pressure on Michael's brain complicated matters. Dr Du Plessis told us in July 2023, after the first brain surgery whilst Michael was recovering from paralysis in the rehabilitation centre in Pta, that we would have to do a craniotomy/decompression early in 2024 because of amount of pressure on Michael's brain. The pressure was so bad that he could see it on the nerves behind Michael's eyes. I asked him at the time if we could not do another scan first and he said it would be of no use - the decompression was crucial. It was also the middle section of the scull that had to be removed - the section that is considered the most dangerous as the main artery supplying blood and oxygen to the brain is attached to this section of the scull. This section is always only done if there was no alternative because of the risks involved and Michael has already had this section done as an emergency operation in 2019.
When we met Dr Tromp early in August 2023, he confirmed that there was an extreme amount of pressure on the brain and lots of damage from the first brain operation. We had to see an ophthalmologist in September for tests to measure the pressure. The ophthalmologist's feedback was that there was no sign of any pressure on Michael's brain! A CT and MRI scan was done a week before the operation on 2 October 2023 and these scans also confirmed there was no pressure on the brain. Dr Tromp was amazed. After the operation he also confirmed there was no sign of pressure on Michael's brain. The latest MRI scan was needed to see how the brain was recovering, but more importantly, to ascertain how soon the decompression would have to be done.
Dr Du Plessis has studied the latest MRI imaging and said that he had to go back to his notes of the operation in July 2023 as he can remember telling us that he would have to do a decompression early in 2024. He was astonished that Michael's brain has more than sufficient space, the growth rate, i.e. the thickness of the scull seems to have stabilised (which usually happens between the ages of 22 and 25), no sign of intracranial pressure (which is very rare for a marble bone patient) and no operation needed! Michael's ventricles are still a bit bigger than they should be, but that is normal after all the pressure over the years. This will continue to shrink over time. The removal of the tumour has created a bit of space inside the brain. This in effect means that, even if the scull does thicken a bit more, there is space inside the scull to "absorb" any pressure. Another decompression in future is highly unlikely and unless Michael develops any symptoms, an annual scan to monitor the condition is all that is needed.
Michael is recovering well. The biggest frustration for him is the short term memory problems - which have already improved considerably. The occupational therapists and rehab doctor said this can take anything from 1 to 5 years to recover completely. Dr Du Plessis said he only starts to worry if there is no sufficient recovery after 2 years. Michael cannot yet continue with his studies, but we are hopeful he will be able to from July.
In summary - Michael is already a walking miracle and should not be alive from a medical point of view. 4 out of his 24 operations were life-saving emergency operations where he had less than a 50% of survival. Every time God pulled him through. The fact that he has no intracranial pressure on his brain is yet another MIRACLE. We would obviously want our son to be healed completely and know God can do this, but we trust in His will and timing. Michael is an inspiration to so many people and we are so proud of him, but all praise and glory must go to God who brought him to where he is. We appreciate every prayer, every message of support, every hug through a difficult journey the past 9 years.

25/01/2024

Michael is having a full MRI brain scan this afternoon. Please pray with us that the MRI will show that all his brain functions are normal, that his brain has sufficient space, that there is no pressure on his brain, no visible brain damage or things that should not be there, and that no further operations will be necessary🙏🏻🙏🏻🙏🏻 We will probably only get feedback from the neurosurgeons early next week.

09/01/2024

As a close friend of the family, I have initiated a Back-a-Buddy Campaign, hoping that friends, and those who have followed this brave young man's very difficult journey, would find it in their hearts to contribute towards this family's endless medical expenses, especially with the scans and tests that are needed to be done this month, and all that is to come. Every little bit helps. If you could share the link below with your family and friends, it will be greatly appreciated. Thank you. Petro

Sean Michael Connoway, known as Michael, is a remarkable 22-year-old who battles a rare and life-threatening condition called Marble Bone Disease. Despite bein

30/12/2023

Happy 22nd Birthday Michael!

Six months ago you were doing so well in your studies, you had dreams and happy things to look forward to, then life threw you the biggest curve ball yet. God carried you through probably the worst couple of months in your life and it was not easy. You never gave up - we are so proud of you.

I am so sorry your plans and dreams did not go as you wanted, but we will continue trusting God's plan for your life.

Love you to the moon and back xx

https://m.facebook.com/story.php?story_fbid=547779720720352&id=100064649867363&mibextid=UyTHkb

19/11/2023

The tests have pinpointed the specific type of bacterial infection. More specific antibiotics have been added. Michael could only have picked up the germ in the hospital in CT after the October operation.

If all goes well, Michael should be able to come home on Tuesday. He is looking a lot better, but is tired and has had enough.

We pray this is now the last of the nightmare of events he has gone through since July this year. We will continue to concentrate on the many things we have to be thankful for. We know God has carried us thus far and that He is in control. He knows the plans he has for Michael. 🙏🏻

Thank you for all your prayers and support❤️