John-Robert's Life Changing Surgery
Donation protected
John-Robert was born full term at 40 weeks but unfortunately had a very complicated birth. When he was born, his airflow was cut off which resulted in brain damage. At 18 months old he was diagnosed with Spastic Diplegia Cerebral Palsy. To enable him to walk independently in all environments he needs an operation called Selective Dorsal Rhizotomy (SDR). This operation is performed in the U.S at the St.Louis Children’s Hospital by the world famous Dr.Park. The operation cost approximately $75,000 Canadian with an additional cost of approximately $25,000 in additional medical and incidental expenses. Intensive physiotherapy is required for two years post op with a cost of aprroximately $20,000 or more.
John-Robert is a happy, determined little 2 year boy that just wants to walk and run in all environments, so he can join in and have fun with all his friends and start of Pre K in a regular classroom. The frustration is beginning to show with him as he grows up and realizes his limitations. He so desperately wants to walk and run but his legs just won’t let him move the way he wants to cause they are so tight.
As a parent it is truly heartbreaking to have to sit back and watch your very bright, smiley little boy struggle to get around. There are truly no words that can describe the feeling of our son being accepted for this once in a life time operation. This surgery will change our son's life and future.
SDR is a spinal cord operation, the nerve rootlets in the spin will be cut that are effecting J.R’s legs to be tight (spastic). J.R. will be able to move freely and live a very normal life with this operation. Dr. Park's prediction after surgery is he will be able to walk, run, drive and even go onto playing sports with this surgery. We can't tell you what hearing this feels like. We were told that J.R would possibly never walk when he was younger because of his diagnosis. He has been beating all the odds against him. If our son does not have this surgery he will be pushed into a wheelchair very early on in life. For all surgery details and information you can visit the following link. http://www.stlouischildrens.org/sites/default/files/services/cerebral_spasticity/files/SDRbrochure_final.pdf
Unfortunately at this current time Ohip will not cover any of the cost for the surgery even tho it is not available here in Ontario, Canada. We are left paying for all the expenses of this operation on our own. We are left to fundraise and take out a bank loan to make this operation happen. John-Robert's surgery is scheduled for January 2017 or earlier if we get called. We have personally got to meet with 8 other families in Ontario that have had the SDR operation and have got to hear about there children's life changing journey along with the struggle they had to face to get there child to St.Louis for surgery and raise well over a $100,000 to make it happen. It's very unfair that families have been left to deal with situation on our own. Global News has run stories trying to help families get the answers they need. Still nothing has been done to support families that children have been expected for this life changing surgery.
http://globalnews.ca/news/2170390/families-fighting-for-childrens-surgery-rejected-by-ohip/
This is a petition that has been circling that you may have a look at please feel free to sign and share.
https://www.change.org/p/hon-dr-eric-hoskins-minister-of-health-and-long-term-care-ontario-health-insurance-plan-approve-selective-dorsal-rhizotomy-surgery?recruiter=544484387&utm_source=share_petition&utm_medium=facebook&utm_campaign=autopublish&utm_term=des-lg-no_src-no_msg
http://jrsjourney.ca
Thank you for your support
Jennifer, Andrew and John-Robert Caldwell
John-Robert is a happy, determined little 2 year boy that just wants to walk and run in all environments, so he can join in and have fun with all his friends and start of Pre K in a regular classroom. The frustration is beginning to show with him as he grows up and realizes his limitations. He so desperately wants to walk and run but his legs just won’t let him move the way he wants to cause they are so tight.
As a parent it is truly heartbreaking to have to sit back and watch your very bright, smiley little boy struggle to get around. There are truly no words that can describe the feeling of our son being accepted for this once in a life time operation. This surgery will change our son's life and future.
SDR is a spinal cord operation, the nerve rootlets in the spin will be cut that are effecting J.R’s legs to be tight (spastic). J.R. will be able to move freely and live a very normal life with this operation. Dr. Park's prediction after surgery is he will be able to walk, run, drive and even go onto playing sports with this surgery. We can't tell you what hearing this feels like. We were told that J.R would possibly never walk when he was younger because of his diagnosis. He has been beating all the odds against him. If our son does not have this surgery he will be pushed into a wheelchair very early on in life. For all surgery details and information you can visit the following link. http://www.stlouischildrens.org/sites/default/files/services/cerebral_spasticity/files/SDRbrochure_final.pdf
Unfortunately at this current time Ohip will not cover any of the cost for the surgery even tho it is not available here in Ontario, Canada. We are left paying for all the expenses of this operation on our own. We are left to fundraise and take out a bank loan to make this operation happen. John-Robert's surgery is scheduled for January 2017 or earlier if we get called. We have personally got to meet with 8 other families in Ontario that have had the SDR operation and have got to hear about there children's life changing journey along with the struggle they had to face to get there child to St.Louis for surgery and raise well over a $100,000 to make it happen. It's very unfair that families have been left to deal with situation on our own. Global News has run stories trying to help families get the answers they need. Still nothing has been done to support families that children have been expected for this life changing surgery.
http://globalnews.ca/news/2170390/families-fighting-for-childrens-surgery-rejected-by-ohip/
This is a petition that has been circling that you may have a look at please feel free to sign and share.
https://www.change.org/p/hon-dr-eric-hoskins-minister-of-health-and-long-term-care-ontario-health-insurance-plan-approve-selective-dorsal-rhizotomy-surgery?recruiter=544484387&utm_source=share_petition&utm_medium=facebook&utm_campaign=autopublish&utm_term=des-lg-no_src-no_msg
http://jrsjourney.ca
Thank you for your support
Jennifer, Andrew and John-Robert Caldwell
Organizer
Jennifer Aileen LeBlanc Caldwell
Organizer
Oshawa, ON