Bentley's Journey to Walk
On December 6, 2011, despite everyone’s best efforts, our twins, Cooper and Bentley were born 3 months premature weighing just over 3 pounds. They were small enough to fit in the palm of your hand, connected to many tubes and wires and it was days before we could hold them. Not knowing whether or not one or both of your children will survive another day is an awful experience.
During their 2 month NICU stay, we would do shifts and divided up our time between being home with our one year old son, Tye, and being at the hospital with our twins.
As he grew, Bentley appeared emotionally, socially, and cognitively appropriate for his age and many specialists and professionals were hopeful and felt that our son would overcome his physical difficulties.
Little had prepared us for the heartbreaking news we received just a few days after Bentley’s first birthday – that a small brain bleed at birth had caused permanent damage resulting in a diagnosis of Cerebral Palsy. Receiving the diagnosis was a game changer for us and we were frightened.
What we needed was to grieve, and to get comfortable with not knowing what exactly our child would be facing and what he would need from us, his parents. We were told he may never sit, never walk, never talk. But, we were also told that he may – and that was good enough for us.
During the last 3 years, we have done it all. We have tried numerous therapies, programs, equipment and medical procedures. The last three years of our lives have been committed to providing every possible opportunity for Bentley to learn to talk, walk, socialize, learn and participate in activities alongside his brothers. With our “you can do anything” attitude, countless hours of therapy and a very determined little boy, Bentley has achieved milestones we were uncertain he may ever reach – not only can he sit, crawl, walk with a walker and canes and speak in complete sentences, but he is also remarkably funny, social and smart.
Every parent has hopes for their child – that they will find love and happiness and make their mark in the world. And, we have the same hopes for Bentley. Most of all, we want Bentley to be seen for the amazing person he is and for people to not focus on the fact that he cannot yet walk. We want him to grow up in a world of acceptance, tolerance and inclusion and we are dedicated to ensuring that is made possible. But, add to that the fact that we want him to experience running to first base, jumping on a trampoline, or at the very least, walking across the room to give us a hug.
Hope is what you will give Bentley and our family when you donate to Bentley’s Journey to Walk
With the help of a remarkable surgery called SDR (Selective Dorsal Rhizotomy) performed at St. Louis Children’s Hospital. The surgery will be performed by Dr. Park, who has been performing this surgery for 27+ years with over 3,000 of these surgeries on kids just like Bentley with amazing outcomes. Dr. Park believes Bentley is an excellent candidate for this procedure and predicts that after this surgery Bentley will walk unassisted in all environments, will eliminate his spasticity and improve his overall condition and comfort. This exciting news has lead us to our next challenge, raising money for this life changing procedure and turning Bentley's hope to walk into a reality.
Why are we fundraising?
The less invasive SDR technique utilized by Dr. Park is not performed in Canada, not to mention finding a doctor with the amount of experience and success that he has had with this procedure is not available here. OHIP will not cover the cost of the procedure and due to the huge expense for the initial surgery and the 3 weeks of post-operative therapy that is required on-site in St. Louis, we are raising the $100,000 it will cost for the complete procedure and post-operative care in St. Louis and at Home. Once home, Bentley will require 4 to 5 days of private physiotherapy for up to 1 year. Without your help Bentley simply won’t have access to this life-changing procedure and the possibilities and hope of him ever walking unassisted are gone. Every dollar of your donation will go towards helping our beautiful 3 year old son fulfill his journey.
You can make a difference and you can play a major part in helping a child walk and changing his life forever.
Bentley is 3 years old and is the youngest of our three boys. Our oldest son is Tye (5 y/o) and Cooper is Bentley’s Twin born 56 minutes earlier.
At 20 weeks into the pregnancy is when we found out we would be the lucky parents of twins and 9 weeks later at 29 weeks gestation Bentley & Cooper were born (3 Months Premature). With older brother Tye at home we were now blessed with 3 boys under 18 months old. Life has been nothing short of busy but we have loved every minute of it.
Bentley currently walks with the assistance of a walker and is currently building up endurance with the use of quad canes. Utilizing these devices tends to slow him down and he often resorts to crawling to keep up with his brothers. However, crawling is causing other issues such as leg and knee pain and can’t be sustained for long period of time especially as he grows.
Bentley loves to be active and has taken to a real love of sports especially hockey and baseball. This is where the hope for him walking comes in. We would one day love to see Bentley skate alongside of his brothers or round 3rd base on his way to home plate in baseball. Bentley participates in Swimming, Horseback Riding, Soccer and was the youngest player ever to join his Sledge Hockey team last year.
Bentley is very driven and loves to throw and catch balls, glide fast along the ice in his sledge, shoot the puck into the net and running around in his walker kicking balls. He has also been able to learn to peddle a trike this spring and loves to go out for bike rides with his brothers.
Bentley in the Community
Bentley is the 2015 KidsAbility Ambassador for the Guelph-Wellington Region. KidsAbility is a dynamic, multi-faceted organization that serves children with a wide range of special needs. Bentley not only benefits from the services but is also an advocate for the foundation through the many activities and fundraising events he attends for KidsAbility as the Ambassador.
Even at the age of 3 Bentley spends a great deal of time in the community raising awareness about disabilities and has met with many political figures and celebrities.
Bentley and our family have done public speaking, community events, radio and TV interviews to help raise awareness.
Thank you for taking the time to read our story and contributing to a great cause for our little boy!
Bentley continues to work tirelessly and is so motivated to up his step count. This morning he was awake with the birds and on his way to a two hour private CE Therapy session in Mississauga. Most times Sophie has him completing 100 to 200 crunches and sit-ups just as a warm up, followed by lots of leg, core strengthening and balance activities. Every week he is progressing and it has taken time not only to build up his strength but also his confidence. Today's session he continued to increase his steps and finished with just over 70 and is even able to turn a corner as he did it. Remarkable what this little boy has accomplished in just over a year. Amazing what he can do now that he has control over his body. Watch and enjoy the fruits of his labour! Words can't described just how proud of him we are and how excited we are to see what comes next.
Much love for your continued support, prayers and positive vibes.
Chad, Melissa, Tye, Cooper, Bentley and Layla
Bentley continues to work hard everyday and is getting much stronger and more confident. We are so inspired by him, he is wise beyond his years and he faces any challenge head on with a brilliant smile on his face. We are so very proud of him and more importantly he is proud of himself. Bentley is destined to do great things and we know he can overcome any adversity that life throws his way. #Strength #Determination #Perseverance
We hope you enjoy the little video showing a very small snapshot of a day of walking at home!
Bentley has progressed exactly as predicted and continues to excel every single day. He now is just building his strength, stamina and the skills he has learned. A lot of the focus has been on walking in a realistic environment with distractions, being unbalanced and how to not over correct himself. Bentley is learning proper breathing techniques to help focus his energy and help with his concentration. He has started to master walking in straight lines (100+ Steps in a Row) and we are now working towards perfecting some of the transitions that will be needed like turning, bending, changing direction and stopping without the aid of a piece of furniture. It is amazing how far he has come in one year and we hope you are all amazed at how much he has been able to accomplish as we are. The sky is the limit at this point. He is also starting to do all of this outside of his therapy settings and has even started to take a few steps in his classroom at school. Based on his progress and the doctor’s predictions Bentley with his continued therapy will be walking independently without support in all environments. This means at home, in the mulch on the playground or sand on a beach. This is the goal we continue to work towards. They believe he will also run, jump and play the sports he loves so much. Bentley has a very bright future!
It is incredibly important to note that the benefits have also gone far beyond just walking and here is a sampling of what has been possible because of the SDR surgery:
• The best sleep he has ever had since the surgery. No more mid night wake ups crying because of the muscle cramps and spasms in his legs, and no more pain at all. Prior to the surgery we would need to rush to his bed to massage and stretch his legs several times a night because of the tightness. Not one has this happened in a year. If this were the only improvement from the surgery, it would have made it all worth it.
• He can now ride the exact same bike as his twin and his greatest joy has been his ability to ride along side of his brothers.
• Successfully achieved his Purple Stripe in Karate alongside his brothers.
• Although he is an avid sledge hockey player, he has wanted to get on skates with his brothers and with his progress he has been able to do that this year as well. A major accomplishment and one he wants to continue to build on. When he grows up he aspires to be an astronaut, a motorcycle driver and a pro hockey player. He plans on lacing up all winter and skating – there is nothing that will stop him from this goal.
• Gained more independence with basic day to day tasks. He is able to get himself undressed, and has started to learn to put on some of his own clothes. He is able to get on and off the toilet on his own. He is able to get up to the bathroom sink without support, get his toothbrush, apply toothpaste and brush his own teeth, use his mouthwash and also floss. The value to his independence and dignity is nothing short of amazing. All things not possible before SDR.
• We have been able to remove all of the extra support, no more leg braces or supports. He still utilizes his canes for speed and moderate distance. Bentley also still utilizes his walker for fast play activities such as Gym Class, Recess and very long distances to help avoid fatigue (Day at the zoo, aquarium etc).
Also since our last update:
• Bentley has become a big brother to the new addition to our family. On August 23rd we welcomed Layla Mitchell into our amazing, full-of-love and often chaotic family. Bentley is an amazing big brother and he loves his little sister so much.
• Bentley and his twin brother Cooper turned 5 on December 6th. They enjoyed a Pokemon Party with their friends
• As a family we have continued to give back each month to the community to support different charities. We ensured the boys are part of the giving to understand the positive impact we can have on others. We are so thankful for what others have done, we have made it our mission to pay it forward.
We tend to forget just how complex walking really is. All the intricacies and the many pieces that must come together perfectly for it all to work. Below you will see two very different and telling videos of just how far Bentley has come. The first is just over a year ago and prior to the SDR surgery. You will see just how difficult and painful walking was with his devices. Take notice of how much he is on his toes, his foot position, posture and legs. Bentley was not in control of his legs and the spasticity dominated his movement. In the second video you can see a very different boy. Not just the walking but his ability to stand up under his own power, balance and control his body and take the first of many steps towards the camera. This has now become a regular occurrence and it truly amazing to watch. A boy who is now in control and has started to build on all the tools he has developed over the last year. We are so excited to see where we will be in this journey a year from now. Bentley works hard every single day and we continue to see gains. Even for Melissa and I as we watch the first video it is amazing to see how far he has come and the impact this surgery has had on his life today and how it has set him up for success in the future.
We think of each and every one of you with each glowing accomplishment. Not a day goes by that Bentley doesn’t wake up with a smile on his face ready to face the challenges of the day, all now made easier because of your generosity and love. One of the greatest gifts from this journey will be the stories like this one that we can continue to share with Bentley as he gets older. How despite all of the bad things happening in the world around us, the vast majority is good and made better by the people that want to help and be part of something great and make a difference in the world. Thank you for making a positive difference in the world and to a little boy at the center of our world.
Happy Holidays to you and your family.
With much love,
Chad, Melissa, Tye, Cooper, Bentley & Layla
Bentley continues to make new strides each day and has accomplished so much since our last update…
First, we want to apologize for the long delay in getting an update out via Go Fund Me. We encourage anyone with Facebook to join our group as we post quick updates frequently: https://www.facebook.com/groups/bentleysjourney
To say things have been busy at the Mitchell house would be an understatement and will give you some clarity on the delay. Bentley is proud to announce the arrival of our 4th Baby!!! His little Baby SISTER is due on October 1st !!
Now on to the important update on Bentley. His progress has been nothing short of amazing. In only a few months he is completely out of his tall and short leg braces, he has begun to practice his walking in bare feet with no support. Bentley has excelled at each stage and built up his endurance and distance. Of course each time we removed a support item Bentley had to work hard to build his step count up again. Recently he went through a significant growth spurt and had to relearn his growing body and find his center of gravity. Bentley completed his first year of school in Junior Kindergarten and got a fantastic report from his teachers, despite his busy therapy schedule we ensured he attended as much school as possible to be with his peers and enrich what was being done from a physical perspective. Bentley also continues to be a community leader and involved with many charity events such as Celebrate Sunrise (Therapeutic Horse Back Riding), KidsAbility Superhero Run, Movati Rock The Foundation Event and the Guelph Wish Fund for Children’s Golf Tournament.
Work, Work, Work and always with a smile on his face. Bentley continues to make significant gains at his primary Therapy (Conductive Education) and continues multiple times a week, private physiotherapy twice a week, KidsAbility physiotherapy once a week, Horseback Riding once a week, swimming each day, stretching and strength program at home each day, Guelph Minor Baseball and he has also started Karate once a week. In June, Bentley successfully completed a 1K Walk during the Superhero Run / Walk and we are all so proud of what he has been able to do. Bentley was also very lucky to spend 2 weeks in May at an intensive therapy and strength training program with the world renowned Walk This Way team that had come to Canada to work with SDR kids all the way from Scotland. Walk this Way developed a strength, stretching and conditioning program for children with Cerebral Palsy and specifically children that have had the same SDR surgery as Bentley. They have also developed an individualized plan for Bentley for us to follow at home. Ideally we would like to have another session again next year but it would require a trip to their secondary facility in Texas. Bentley continues to have no muscle pain, very restful sleeps with no waking up in the night with leg cramps and has significant range improvement with his legs that help in so many other areas of his day to day life. One huge accomplishment is his ability to ride the exact same bike as Cooper and more importantly he is able to ride alongside his brothers. Something he is so proud of and probably one of his favourite activities. On top of all this Bentley is now able to walk 60+ steps without his walker or cane, under his own power and in bare feet. This is absolutely amazing with no support, not even the support of a shoe. He continues to get stronger and his stamina is improving each day. He has even started to take more risk around the house, standing and balancing or trying to walk short distances all on his own. We work hard every day to overcome his fear of falling and his confidence is building. The focus now is to get him to start to do it in his day to day life that are filled with visual and audio distractions, other people and objects moving around him. Bentley also has progressed from using his multi-point or tripod style canes to single point canes which is also a huge accomplishment. Bentley still does use his walker for very long distances (day trips, splash pads etc) or where we want him to spend his time engaged and playing with his peers as he is much faster in his walker and can keep up. So if you do happen to see him out and about in his walker it is most likely because he wants to go fast to keep up with his brothers.
You all have been such a large part of this success and we are so thankful every day to everyone that supported us and contributed to our campaign. We have been so blessed and with the rigorous pace of his therapy schedule the remaining amount left in Bentley’s Journey to Walk account will get him the continued therapy he needs to continue his progress until December of this year. Towards the end of the year Melissa and I will revaluate his progress with all of his therapy team to determine therapies, schedules and time frames for 2017.
Chad, Melissa, Tye, Cooper and Bentley
I came across your story as I'm researching availability of SDR for my 3 year old Daughter who has CP. we live in Vancouver, BC Canada and she is seeing a neurosurgeon in October at BC Childrens Hospital. I have read a lot about Dr Park being the leading neurosurgeon in this procedure. Because we live in BC, not Ontario, I'm not sure if our experience will be different than yours, but I would love to be in contact to get more information as you have been through this journey we are about to embark on. Was surgery at BCCH hospital ever a consideration? Any words of wisdom or advice would be appreciated!
Thank you for the update on Bentley's amazing journey. He's inspirational and you must be very proud of him. Please let him know that he has a fan in England. Merry Christmas to you all and all the best for his progress in 2017.
Dear Chad and Mel. I am full of admiration for you both. You carry your responsibilities as parents with such grace. I wish for you nothing but great luck and strength and I send you my love and strength. Eileen DiNatale
Am totally speachless and full of admiration. Eileen Di Natale
very happy to hear the great news about your surgey. good luck, and keep me up to date.
Here in Avonmore, ontario, it was brought to our attention about Bentley's Journey. We went on a car cruise, with Jamie Leroux, and his mom and dad. we had alot of fun. it was all done in good faith for this strong brave little boy named Bentley. And we will be at the next two car cruises as well. stay strong little man, we all think of you and your family every day. Maybe one day you will be able to come and meet us. I myself would love to meet you. so stay strong, and don't forget we are taking this journey with you. huges, kisses, and love go out to you. best regards Your Avonmore family.