The Brandon Cole Story

Brandon's Medical Team

It seemed we were always seeing doctors, whether it was the initial ear infections he suffered as a baby or the deeper complications of NF like his 'pectus excavatum'. This was actually what started us on the road to the final diagnosis of NF. Brandon had a slight indentation in his chest cavity, he was born with it. At the age of five, he was seen by specialists at the Alberta Children's Hospital (Opens in a new window) to ensure it was not impeding his breathing or heart rate. We'd been referred to an orthopedic surgeon for further analysis and it was during these appointments that we actually found the cause. We now know 'pectus excavatum' to be a condition of NF.

So began the yearly rounds of medical appointments. Under the care of a primary pediatrician, we saw a vast variety of specialist on a regular basis. Yearly MRI's were done after finding the tumours on his brain and to look for any other complications that could show up anywhere in his entire body. He had annual learning tests, hearing tests, eye tests, x-rays, ultrasounds, and neurosurgeon appointments. The list just goes on and on. All this was done to monitor the ever-changing complications of this rare condition. It was always 'no news is good news' kind of pressure.

Then, at 12, just when he was entering the toughest years of his life, we were told he would require the brace as his scoliosis was getting worse. This was perhaps the most difficult thing he faced. Not only was he the 'kid with the brain disease', his peers now also had something physically visible for them to use as ammunition to make him feel even more of an outcast. The orthotic team that fitted and constructed the brace were just awesome and Brandon actually didn't seem to mind the endless rounds of appointments that were never really positive. 'No change' was the best we could hope for at any time.

All of this was carried on through the Alberta Children's Hospital and we are forever indebted to them for their unending efforts to help us in any way they could. No one could predict what could/would happen; all we could do is watch and hope. Looking at the big picture, Brandon's life would never have been 'normal'. There was a 50/50 chance of passing this onto your children so even having kids was something huge. He could have ended up with rods in his spine, in a wheelchair or worse. Now at least he will never have to live through that.

We are forever grateful for the wonderful support we'd received from the >Alberta Children's Hospital during the 9 years of endless doctor's appointments. The quality of care we received was beyond what anyone could begin to imagine, they were always on it, always testing and looking for problems. We would like to thank all of you from the bottom of our hearts for all you did to make Brandon feel like a 'normal' kid! May God continue to help you help the children!

Brandon's Medical Team It seemed we were always seeing doctors, whether it was the initial ear infections he suffered as a baby or the deeper complications of NF like his 'pectus excavatum'. This was actually what started us on the road to the final diagnosis of NF. Brandon had a slight indentation in his chest cavity, he was born with it. At the age of five, he was seen by specialists at the Alberta Children's Hospital to ensure it was not impeding his breathing or heart rate. We'd been referred to an orthopedic surgeon for further analysis and it was during these appointments that we actually found the cause. We now know 'pectus excavatum' to be a condition of NF. So began the yearly rounds of medical appointments. Under the care of a primary pediatrician, we saw a vast variety of specialist on a regular basis. Yearly MRI's were done after finding the tumours on his brain and to look for any other complications that could show up anywhere in his entire body. He had annual learning tests, hearing tests, eye tests, x-rays, ultrasounds, and neurosurgeon appointments. The list just goes on and on. All this was done to monitor the ever-changing complications of this rare condition. It was always 'no news is good news' kind of pressure. Then, at 12, just when he was entering the toughest years of his life, we were told he would require the brace as his scoliosis was getting worse. This was perhaps the most difficult thing he faced. Not only was he the 'kid with the brain disease', his peers now also had something physically visible for them to use as ammunition to make him feel even more of an outcast. The orthotic team that fitted and constructed the brace were just awesome and Brandon actually didn't seem to mind the endless rounds of appointments that were never really positive. 'No change' was the best we could hope for at any time. All of this was carried on through the Alberta Children's Hospital and we are forever indebted to them for their unending efforts to help us in any way they could. No one could predict what could/would happen; all we could do is watch and hope. Looking at the big picture, Brandon's life would never have been 'normal'. There was a 50/50 chance of passing this onto your children so even having kids was something huge. He could have ended up with rods in his spine, in a wheelchair or worse. Now at least he will never have to live through that. We are forever grateful for the wonderful support we'd received from the >Alberta Children's Hospital during the 9 years of endless doctor's appointments. The quality of care we received was beyond what anyone could begin to imagine, they were always on it, always testing and looking for problems. We would like to thank all of you from the bottom of our hearts for all you did to make Brandon feel like a 'normal' kid! May God continue to help you help the children!		Introduction Dedication Medical Problems His Medical Team His Education His Teen Years His Death His Challenge To You Photo Gallery

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