Reeve Cahoon's Medical Expenses
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At 2.5 years old, Reeve Cahoon is about to embark on a journey most of us can't imagine. In the new year, he will be having half of his brain disconnected/removed- a procedure called a hemispherectomy.
Reeve was born with a rare neurological disorder called Sturge Weber Syndrome (SWS). What that means:
⁃ A port wine stain covering 75% of his head, his right arm and upper body, and part of his right leg.
⁃ Vascular abnormalities which affect the side of his body with the port wine stain. He wears a compression stocking on the right arm to restrict the blood flow and maintain the over growth.
⁃ Unlike some other birthmarks, such as a "stork bite" or "strawberry," a port-wine stain grows as the child grows and will last a lifetime. The color gets darker, turning purple or a deep red. The skin often gets thicker, and it may go from feeling smooth to pebbly. To prevent this, pulsed-dye laser treatments are needed. This in unavailable in Winnipeg, and the family has to travel to Calgary to do so. Manitoba health covers air fare for one parent and everything else is out of pocket. Laser surgery is to be done every 3 months (not over the summer months because the UV rays). Reeve has already been for 2 treatments. They have been placed on hold due to seizures and brain surgery being scheduled. He will continue next fall.
⁃ Reeve has glaucoma in his right eye and has since birth. His first eye surgery was when he was just a wee baby and has had 3 to date. Most recently, he had a valve inserted into his eye in a hope to keep the pressure within safe ranges as traditional medications were no longer able to. When the pressure is high it causes damage to the nerve leading to vision loss.
⁃ Reeve suffers from seizures due to the abnormal blood flow in his brain. Sturge Weber seizures are different, more serious and appear differently than what you may think. Although Reeve has had many seizures, the most serious happened just one year ago when he coded twice and went into status seizures for 75 minutes placing him in the PICU at Winnipeg's Health Sciences Centre. SWS seizures are hard to manage when they occur. They come in clusters and don't respond well to medications to stop them.
⁃ Although medications have been keeping the seizures at bay for the most part, it's ideal to rid the cause of them in order to provide the most positive outcome for reeve and prevent the seizure risk. Every time Reeve seizes, there is a very real chance that he can lose his life or become permanently brain damaged therefore lessening the quality of his life.
⁃ This is where the hemisphectomy comes in. The Cahoon's will travel from Winnipeg to Toronto early in 2017 where reeve will undergo a massive surgery. The surgeon will be disconnecting the right side of his brain in order to prevent the "thunderstorm" of his brain activity which leads to seizures. The surgery will take anywhere from 6-10 hours.
⁃ Reeve will have the surgery, and stay in the hospital for 7-10 days before being transferred to Bloorview Rehab Hospital in a surrounding city. He will be there for up to 4 months.
⁃ Reeve will wake up from surgery fully paralyzed on the left side. He will relearn how to do all things he already knows how to do (walk, talk). He will lose 50% of his visual field to the left, lose most mobility of his left arm/hand, which will be referred to from that point on as a "helping hand". He will require a brace for his foot to lift it as he goes up stairs and walks. He will have a drop foot. It's going to be a very long road of rehab, therapy and appointments.
Here's how you can help. As you can imagine, this was not an easy decision for Reeves family to come to, especially knowing the expected outcome in order to ensure Reeve the best quality of life.
Many people don't realize that Manitoba Health does not provide much assistance. They cover airfare for one parent, as well as the cost of any procedures.
However, as I'm sure you can imagine, both parents deserve to and want to be there with Reeve for the duration of their time in Ontario.
That leaves Ashley and Shawn to pay out of pocket for one adult airfare to and from Toronto, the loss of Shawn's wages for up to 4 months so he can be with the rest of his family, as well as the accommodation at the rehabilitation hospital for up to 4 months at the cost of up to $5000. That's all on top of the costs of upkeep of your own home for months while you're out of province.
Ashley did not return to work after Reeve was born due to his high medical needs and not knowing what was to happen day to day.
Also, at this time, Reeve does not meet the criteria for the Disability Credit through Revenue Canada, and may continue to be declined after the surgery as well.
Any money raised will go to providing Ashley and Shawn the opportunity to be with Reeve throughout his procedure and rehabilitation in Ontario. As well as their continued journey of follow ups in Ontario and laser surgeries in Calgary. In mid December, they will be going to meet the medical team, and surgery will be late January/early Feb.
To date, the family has traveled to:
- Toronto October 2014 (vascular team)- Calgary January 2015 (vascular team)
- Calgary October 2015 (laser surgery)
- Boston December 2015 (neurosurgery and vascular teams)
- Vancouver April 2016 (neurosurgery)
- Vancouver May 2016 (Brain Surgery that was then cancelled)
- Calgary October 2016 (laser surgery)
If you're willing and able to help this wonderful family, any all help would be greatly appreciated and will most certainly go to a worthy cause. Anyone who gets an opportunity to meet Reeve soon understands the fragility of life, and the zest this little man has. He's quite the character. To date, Reeve has had 12 general anesthetics, and each time he wakes up, you'd never know he's having a bad day ☀️
If you'd like more information on what a hemispherctomy entails including expected outcomes, here is some great information:
http://hemifoundation.homestead.com/facts.html
https://www.facebook.com/groups/29122689930/permalink/10154128481109931/
Please follow Reeve and get updates on his Facebook page - Reeve's Journey.
Thank you in advance from the Cahoons and the extended Cahoon and Martin families. Your support of all forms means the world and goes farther than you know
Reeve was born with a rare neurological disorder called Sturge Weber Syndrome (SWS). What that means:
⁃ A port wine stain covering 75% of his head, his right arm and upper body, and part of his right leg.
⁃ Vascular abnormalities which affect the side of his body with the port wine stain. He wears a compression stocking on the right arm to restrict the blood flow and maintain the over growth.
⁃ Unlike some other birthmarks, such as a "stork bite" or "strawberry," a port-wine stain grows as the child grows and will last a lifetime. The color gets darker, turning purple or a deep red. The skin often gets thicker, and it may go from feeling smooth to pebbly. To prevent this, pulsed-dye laser treatments are needed. This in unavailable in Winnipeg, and the family has to travel to Calgary to do so. Manitoba health covers air fare for one parent and everything else is out of pocket. Laser surgery is to be done every 3 months (not over the summer months because the UV rays). Reeve has already been for 2 treatments. They have been placed on hold due to seizures and brain surgery being scheduled. He will continue next fall.
⁃ Reeve has glaucoma in his right eye and has since birth. His first eye surgery was when he was just a wee baby and has had 3 to date. Most recently, he had a valve inserted into his eye in a hope to keep the pressure within safe ranges as traditional medications were no longer able to. When the pressure is high it causes damage to the nerve leading to vision loss.
⁃ Reeve suffers from seizures due to the abnormal blood flow in his brain. Sturge Weber seizures are different, more serious and appear differently than what you may think. Although Reeve has had many seizures, the most serious happened just one year ago when he coded twice and went into status seizures for 75 minutes placing him in the PICU at Winnipeg's Health Sciences Centre. SWS seizures are hard to manage when they occur. They come in clusters and don't respond well to medications to stop them.
⁃ Although medications have been keeping the seizures at bay for the most part, it's ideal to rid the cause of them in order to provide the most positive outcome for reeve and prevent the seizure risk. Every time Reeve seizes, there is a very real chance that he can lose his life or become permanently brain damaged therefore lessening the quality of his life.
⁃ This is where the hemisphectomy comes in. The Cahoon's will travel from Winnipeg to Toronto early in 2017 where reeve will undergo a massive surgery. The surgeon will be disconnecting the right side of his brain in order to prevent the "thunderstorm" of his brain activity which leads to seizures. The surgery will take anywhere from 6-10 hours.
⁃ Reeve will have the surgery, and stay in the hospital for 7-10 days before being transferred to Bloorview Rehab Hospital in a surrounding city. He will be there for up to 4 months.
⁃ Reeve will wake up from surgery fully paralyzed on the left side. He will relearn how to do all things he already knows how to do (walk, talk). He will lose 50% of his visual field to the left, lose most mobility of his left arm/hand, which will be referred to from that point on as a "helping hand". He will require a brace for his foot to lift it as he goes up stairs and walks. He will have a drop foot. It's going to be a very long road of rehab, therapy and appointments.
Here's how you can help. As you can imagine, this was not an easy decision for Reeves family to come to, especially knowing the expected outcome in order to ensure Reeve the best quality of life.
Many people don't realize that Manitoba Health does not provide much assistance. They cover airfare for one parent, as well as the cost of any procedures.
However, as I'm sure you can imagine, both parents deserve to and want to be there with Reeve for the duration of their time in Ontario.
That leaves Ashley and Shawn to pay out of pocket for one adult airfare to and from Toronto, the loss of Shawn's wages for up to 4 months so he can be with the rest of his family, as well as the accommodation at the rehabilitation hospital for up to 4 months at the cost of up to $5000. That's all on top of the costs of upkeep of your own home for months while you're out of province.
Ashley did not return to work after Reeve was born due to his high medical needs and not knowing what was to happen day to day.
Also, at this time, Reeve does not meet the criteria for the Disability Credit through Revenue Canada, and may continue to be declined after the surgery as well.
Any money raised will go to providing Ashley and Shawn the opportunity to be with Reeve throughout his procedure and rehabilitation in Ontario. As well as their continued journey of follow ups in Ontario and laser surgeries in Calgary. In mid December, they will be going to meet the medical team, and surgery will be late January/early Feb.
To date, the family has traveled to:
- Toronto October 2014 (vascular team)- Calgary January 2015 (vascular team)
- Calgary October 2015 (laser surgery)
- Boston December 2015 (neurosurgery and vascular teams)
- Vancouver April 2016 (neurosurgery)
- Vancouver May 2016 (Brain Surgery that was then cancelled)
- Calgary October 2016 (laser surgery)
If you're willing and able to help this wonderful family, any all help would be greatly appreciated and will most certainly go to a worthy cause. Anyone who gets an opportunity to meet Reeve soon understands the fragility of life, and the zest this little man has. He's quite the character. To date, Reeve has had 12 general anesthetics, and each time he wakes up, you'd never know he's having a bad day ☀️
If you'd like more information on what a hemispherctomy entails including expected outcomes, here is some great information:
http://hemifoundation.homestead.com/facts.html
https://www.facebook.com/groups/29122689930/permalink/10154128481109931/
Please follow Reeve and get updates on his Facebook page - Reeve's Journey.
Thank you in advance from the Cahoons and the extended Cahoon and Martin families. Your support of all forms means the world and goes farther than you know
Organizer
Daphne Martin
Organizer
Winnipeg, MB
