Declan's Nomination Story

Declan's medical journey started in 2009 with his battle with cancer. He has battled cancer 3 times. He was just 10 months old his first round and had a major spinal cord resection to remove a very large tumour (C1-T5) from inside his spinal cord. The surgery was 9 hours long. He came out a paraplegic. He worked hard at rehab and eventually was able to walk pushing a walker and wearing leg braces and was considered a mild paraplegic.

He then relapsed when he was 18 months old. He went in for a second surgery (the same surgery he had had before) and came out a complete paraplegic again. He also developed a few conditions as side effects. He has Horners syndrome- which affects his right eye-his pupil doesn't dilate. It also effects his entire body, he can't sweat and cool his body down. If he over heats he is at risk for seizures. He also developed a condition called syringomyelia, which is cysts (pockets of fluid) throughout his spinal cord.

He relapsed again at 2 years old, which is when he did 28 rounds of high dose radiation. He was so very sick and hospitalized for over a month and taken by ambulance for all of his radiation appointments from the hospital to the cross cancer.

Thankfully Declan has been cancer free since, but unfortunately he has so many side effects from his cancer and spinal cord injury. Cognitively he has no issues, he is a very kind, hilarious, thoughtful young man. It is all purely physical limitations with him.

He has had infection after infection and was hospitalized on average every 2 months for 2 weeks at a time for about a year and a half (age 3-4.5). He had to have a finger amputated due to infection, he is missing his 4th digit on his right hand.

Declan has been in for multiple surgeries over the last 13 years. And with every surgery he has had, there have been multiple complications and extra-long hospital stays. He has had a cecostomy button put in due to having little control over his bowels. This surgery allowed him to not have accidents in public (like at junior high school or events he attends). He has to hook himself up to a flush every second day. This pushes water through his entire intestines (from the top) and flushes out his bowels completely. This process takes about an hour and a half to two hours each time.

He has had a mitrofanoff put in for cathing purposes and control over his bladder. With this surgery Declan almost died from complications, a code blue was called on the hospital unit. This was definitely one of the scariest complications he has had. Declan caths every 3 hours daily with a new catheter each time (this can get costly as each catheter costs approximately $2.70).

He has had surgery to lengthen the muscles in his legs. This is where they go in and snip the muscles and snap the foot up and place it in a cast for an extended amount of time. The muscle then starts to heal along with all the scar tissue to lengthen it. With spinal cord injury the muscles can't keep up with the growth of the body, this is why this needs to be done multiple times, the younger the patient the more times it is required to be done as they grow.

He has done this surgery twice so far, once in just the lower half of both legs (age 4) and again on the entire leg of both legs up to the hips (age 8.5). He was in an 'A frame' cast which went up to his hips and had a bar in between holding his legs apart in an 'A' while he healed. He had many complications with the second surgery and ended up at the Stollery for a few weeks, and then was transferred over to the Glenrose Hospital for over 4 months. Unfortunately Declan will require this surgery again within the next year (age 14) and possibly another two times after that until he is done growing.

Declan developed scoliosis because of all the spinal surgeries and radiation. As he has grown over the last 5 years it has worsened and has continued to contort his body and hinder his ability to walk with his canes, sit straight, do certain games/activities with his peers, wheel himself in his wheelchair to classes, and even breathe properly. His body has twisted and was starting to crush his lungs and reduce heart function, this would have eventually crushed both his heart and lungs and Declan would not have survived to adulthood. His twisting led to him developing 'angel wings' where his right shoulder blade was starting to protrude out of his back and create a lot of pain when laying down and sitting. He also developed a condition called kyphosis on his upper spinal cord which left his head in a forward crooked hanging position, and unless treated would make it so that Declan eventually wouldn't be able to hold his head up on his own. It was affecting his balance terribly within the last year or so. To fix this he required two surgeries.

The first surgery was to place a halo in his skull in order to do an intense traction regime to stretch the muscles, tendons and spinal cord in order to prepare for step two. This involved hanging weights from the halo, getting up to 32lbs. The second surgery was to place rods and screws in his upper back along with having a portion of his spinal cord fused together. They also had to break 5 ribs in order to twist the body back around. They had to shave part of the shoulder blade sticking out on the right side and pull the entire shoulder down because it was sticking up and out so high. He just had part two done on September 14, 2022 and has been in the hospital for 4 weeks. He is currently still in hospital slowly recovering from this very big surgery. It has been very hard on his little body and big mind.

Declan has been through so much in his life, he has endured more than most go through in their entire lives. Although he has developed some anxiety and PTSD, he still continues to be so unbelievably brave as he continues to endure surgery after surgery. Declan loves magic and jokes and bringing other people joy. He lights up a room when he comes in and captures the hearts of all who are lucky enough to meet him. Despite all of his obstacles, he tries to always stay positive and live life to the fullest.

This money would not only be beneficial to the family right now (currently they have been in the Stollery for a 4 week stay), but also for money to be set aside for Declan as he gets older. He has a life long struggle ahead of him and will require so many extra things in life that most people don't even think about. Accessible housing, an accessible vehicle equipped with hand controls and wheelchair lift so he can get himself around, supplies to continue with basic life needs, and so many more things. This money would be a Godsend for such a special little boy.

Declan is 14 years old. His Medical Journey started in 2009 when he was less than 1 year old. He has battled cancer 3 times. He's had multiple spinal surgeries where he's come out as a paraplegic and was able to rehabilitate to mild paraplegic more than once. He's had many other side effects of the multiple surgeries over his lifetime, one being scoliosis. His most recent surgery happened on Sept 14, 2022 and his family currently has a 4 week stay at the Children's Stollery Hospital currently. This has put financial strain on the household and Declan's medical journey is not over.