I just want to send out a great big THANK YOU to all of the wonderful people who have supported us on Ben's journey! We are excitedly counting down the days to his surgery, and freedom from pain. October 28th is now less than 3 months away, and it can't come soon enough.
It is so hard for us to process all of this. The number of people who have come out to support our son is so heartwarming! Thank you, from the bottom of our hearts!
It has been quite a while since we posted an update! Not intentional, we have just been soooo busy! We attended Lucas day on June 8th, had a fun evening of baseball with some Blue Jays greats on June 17th. We are also going to the Mississauga North Baseball Association Honda instructional clinic on June 28th, where they are donating proceeds towards Ben's surgery! We really are so very blessed! Thank you everyone!
Please consider coming out and golfing with us on July 6th as well. Cherry Down's Golf and Country club, contact Matthew Pherrill for details: 416-726-5163. Tickets are only $150, which includes a beef carver dinner, putting challenges, prizes, a gift for every player and a silent auction! Hope to see some of you there!!
Do you like to Golf? Please join us on July 6th at Cherry Downs Golf Course in Pickering!! Tickets are $150, which includes prizes, a fabulous dinner, putting challenges and a silent auction! Contact Matt Pherrill at 416-726-5163!
Only a few days left to get your tickets to our Applebee's Ajax breakfast fundraiser. Pancakes, bacon, coffee, juice and fruit on May 31st from 8:00 to 10:00. Tickets are $15 each, and we have about 40 left!
We also have more silicone bracelets on the way, and our raffle ticket Draw is coming up on June 1st. Pringle Creek P.S., where the kids all go to school, has raised over a thousand dollars, but we won't add that total until we have it all tabulated.
It has been such an amazing journey so far! Lots to look forward to as well!!
We have reached over 10% of our goal! This is a great milestone!! We are most likely looking at an October surgery date, and still have a long way to go, but I am optimistic that we are going to be able to make this happen for Ben! The support that we have received so far has been amazing!!
I feel that there is no way to express in words how grateful I feel for all of the support that we have received! I know that this surgery is going to make a huge difference in Ben's life and day to day functioning, and I just want him to be happy and comfortable. The number of people who have contributed support or donated money or both is just amazing!! From the bottom of my heart, thank you!! (When we figure out how to link out fundraising account to GoFundMe, we will be able to show the cash and cheque donations as well)
Ben is 8 years old and has Left Hemiplegic Spastic Cerebral Palsy. This causes a lot of tightness called spasticity in his muscles, particularly on his left side. Spasticity makes it incredibly difficult for Ben to participate in daily activities, and even walking is a constant challenge.
Even just over the past year, Benjamin has lost a lot of mobility. Just walking short distances without support is a huge challenge for him. As he has grown, his muscles have been so tight that they have not been able to keep up with his growth, causing more leg length discrepancy (his left leg is quite a bit shorter than his right), and less ability to move his left leg and arm. Even with support, Ben has a hard time walking very far, and has been relying more and more on his wheelchair.
In order to improve Ben's quality of life and allow him to run and play more freely, he needs a surgery called Selective Dorsal Rhizotomy. This surgery will release the spasticity, allowing Ben to move more freely. It is done at St. Louis Children's Hospital by a highly skilled and successful surgeon, Dr. T. S. Park. This doctor has a 100% success rate in eliminating spasticity, and has only encountered 2 very minor and easily repaired complications out of the thousands of patients he has operated on.
Unfortunately, in Ontario, the only surgery that was offered to help Ben is a very barbaric orthopaedic surgery. They wanted to rotate his left hip, break his femur to turn his foot out more, and surgically stretch and thin out 3 muscles and tendons in his left leg. This would be followed by 3 months of in-patient care at a hospital, in which his mobility would be very limited. Also, if that weren't bad enough, this surgery would very likely have to be repeated in future.
Within Canada, there are two hospitals that offer variations on SDR surgery. One is in Montreal, the other in Vancouver. However, these surgeons both remove a fairly large section of vertebrae, leaving more room for complications such as scoliosis. They also do not cut as many rootlets, which leaves some spasticity, which of course defeats the purpose.
Without spasticity, Ben will be able to walk with more ease, not have to rely on his wheelchair, not have to get Botox injections in his muscles, and will be able to learn new skills. He will be able to learn how to dress himself, get in and out of the bath tub, climb stairs...all of the things that many of us take for granted. And he will be able to focus more on being a kid.
You see, Ben absolutely LOVES baseball, and being able to actually run the bases and catch the ball like his idols, the Toronto Blue Jays, is his dream. We want to give him the best chance possible to achieve that dream.
This SDR surgery, followed by intense physical therapy, will give Ben a chance to play baseball. And to just play. And to walk and move without pain. He is already 8 years old though, and to ensure it is most effective, we need to make this happen as soon as possible. The older he gets, the less effective it will be.
Ben has had many challenges in his short life. We adopted him when he was 5 years old, and we are his fourth (and final) family. He also lives with Epilepsy, which throws a curve ball for him once in a while. He has a great passion for life though, and hasn't let anything change that!
Please donate, and help Ben run those bases!
**In answer to some questions we have received, the cost of the surgery itself is about $55,000. Other costs include a month long hotel stay in St. Louis, food, and travel while we are there. Also, when we return home, we will need to hire a private physio therapist to work with Ben at least 4 days per week. Hence the $100,000 we are trying to raise. Thank you for supporting Ben!!