Life Without Limits For Oliver
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This is Oliver. Our 3 year old fighter. Born at only 28 weeks he weighed just three pounds. Instead of cherishing those precious moments after birth where a baby is meant to be cradled in his mothers arms, our baby was taken from us and rushed to the Neonatal Intensive Care Unit at Sick Kids hospital in Toronto. He spent the first 10 days of his life there - where the only warmth he felt came from the lights of an incubator instead of our loving arms.
After those 10 long days, when the doctors felt he had stabilized, they transferred him a little closer to home, but he continued to need oxygen and a CPAP to help air move into his very fragile lungs. It wasn’t the start to life that any family imagines for their baby, but our little man fought and got stronger with every breath.
As his time in the NICU was nearing it’s end Oliver struggled to feed, prompting doctors to do an MRI. We were completely unprepared for what came next…
The doctors saw a small amount of damage to the brain. What this would mean was difficult to predict at such a young age, however Cerebral Palsy was a possible outcome. All we could do was keep our thoughts positive and continue on with our daily lives.
As the months passed we began to notice developmental delays… a normal occurrence for premature babies. However at 18 months a formal diagnosis was made.
Oliver had Cerebral Palsy, spastic quadriplegia - meaning all four of Oliver’s limbs are affected. Our world was shaken. As any parent who has counted her baby’s fingers and toes and counted her blessings on her baby’s birth, can relate. We reeled with what this would mean for our baby boy, his future, and of course our family. Oliver will live with this condition for the rest of his life.
Cerebral Palsy is a neurological disorder that primarily affects body movement and muscle coordination. It affects muscle tone, reflex, posture and balance. It can also impact fine motor skills, gross motor skills and oral motor functioning.
Oliver is affected in his legs more than his arms and due to spasticity in his muscles and low muscle tone, he is unable to stand or walk independently - even though he always wants to! His body is contantly fighting against him. He has a walker that he can use and isn’t shy to ask his parents for help. Due to spacticity, Oliver is forced to stand on his toes. Being so tight and spastic is very damaging to the body. Without any interventions Oliver could experience even more pain and impairments that affect his movement and abilities.
Oliver is extremely bright, determined and strong willed. Despite his physical challenges he is a very happy, kind, and hilarious 3 year old. He loves to joke around, play with his big sister, and anyone who meets him falls in love. He has a smile that will light up a room and watch out ladies… this little guy is a big flirt!
Watching him grow is both joy and heart break. Like all parents we want what is best for our little boy. For him to grow and thrive and to live his life as independently as possible.
When your child has a disability it is hard to see how this will happen. Then we were told about SPML -a surgery that could help him. A ray of hope.
We invested much of our time into researching it, and decided that this could be a game changer. Only two surgeons in the world perform this very specialized orthopaedic procedure called Selective Percutaneous Myofacial Lengthening (SPML). A BIG name for surgery for our little boy. One of the surgeons , Dr. Nuzzo, is in New Jersey. SPML will provide relief to the spacticity in Oliver's legs. Relieving muscle pain and giving him the chance at more range of movement. It could be the key to Oliver’s future, enabling him to learn new possibilities and have a better quality of life. The procedure is not available in Canada and OHIP will not cover it. OHIP also will not cover most of the therapy that is required for an entire year post surgery.
Now when faced with this choice parents have a decision to make. And as I’m sure most parents can relate… money seems insignificant compared to giving your child a chance at life. And so it is for us. So we made the decision to borrow the money to pay for the surgery. Going into significant debt to try and do what we can for our son. And we did this without ever considering asking for help.
Until recently. For the longest time we have counted our blessings - Grateful for what we have knowing that there are others in the world that need the money more than us. That will always be the case. But recently a family member reached out to us and we were extremely moved by their offer to help and their generosity So we decided to put our pride aside, for the sake of our son, our family and our future, and open up the giving opportunity to our friends and family. Maybe you can help - whether it’s with money or words or prayers. We gratefully receive it all. Thank you.
Money raised will help cover the cost of Oliver’s surgery, his ongoing rehab after the surgery, specialized therapy equipment at home which amounts to tens of thousands of dollars. Oliver will need to learn how to use muscles that he isn’t aware of yet, so he has a lot of work ahead of him. So do his mom and dad!!!
So again, thank you for taking time to read our story and for your thoughts, and positive energy. We look forward to keeping you posted on our exciting journey ahead.
With love and gratitude,
Angela, Pieter, June and Oliver
After those 10 long days, when the doctors felt he had stabilized, they transferred him a little closer to home, but he continued to need oxygen and a CPAP to help air move into his very fragile lungs. It wasn’t the start to life that any family imagines for their baby, but our little man fought and got stronger with every breath.
As his time in the NICU was nearing it’s end Oliver struggled to feed, prompting doctors to do an MRI. We were completely unprepared for what came next…
The doctors saw a small amount of damage to the brain. What this would mean was difficult to predict at such a young age, however Cerebral Palsy was a possible outcome. All we could do was keep our thoughts positive and continue on with our daily lives.
As the months passed we began to notice developmental delays… a normal occurrence for premature babies. However at 18 months a formal diagnosis was made.
Oliver had Cerebral Palsy, spastic quadriplegia - meaning all four of Oliver’s limbs are affected. Our world was shaken. As any parent who has counted her baby’s fingers and toes and counted her blessings on her baby’s birth, can relate. We reeled with what this would mean for our baby boy, his future, and of course our family. Oliver will live with this condition for the rest of his life.
Cerebral Palsy is a neurological disorder that primarily affects body movement and muscle coordination. It affects muscle tone, reflex, posture and balance. It can also impact fine motor skills, gross motor skills and oral motor functioning.
Oliver is affected in his legs more than his arms and due to spasticity in his muscles and low muscle tone, he is unable to stand or walk independently - even though he always wants to! His body is contantly fighting against him. He has a walker that he can use and isn’t shy to ask his parents for help. Due to spacticity, Oliver is forced to stand on his toes. Being so tight and spastic is very damaging to the body. Without any interventions Oliver could experience even more pain and impairments that affect his movement and abilities.
Oliver is extremely bright, determined and strong willed. Despite his physical challenges he is a very happy, kind, and hilarious 3 year old. He loves to joke around, play with his big sister, and anyone who meets him falls in love. He has a smile that will light up a room and watch out ladies… this little guy is a big flirt!
Watching him grow is both joy and heart break. Like all parents we want what is best for our little boy. For him to grow and thrive and to live his life as independently as possible.
When your child has a disability it is hard to see how this will happen. Then we were told about SPML -a surgery that could help him. A ray of hope.
We invested much of our time into researching it, and decided that this could be a game changer. Only two surgeons in the world perform this very specialized orthopaedic procedure called Selective Percutaneous Myofacial Lengthening (SPML). A BIG name for surgery for our little boy. One of the surgeons , Dr. Nuzzo, is in New Jersey. SPML will provide relief to the spacticity in Oliver's legs. Relieving muscle pain and giving him the chance at more range of movement. It could be the key to Oliver’s future, enabling him to learn new possibilities and have a better quality of life. The procedure is not available in Canada and OHIP will not cover it. OHIP also will not cover most of the therapy that is required for an entire year post surgery.
Now when faced with this choice parents have a decision to make. And as I’m sure most parents can relate… money seems insignificant compared to giving your child a chance at life. And so it is for us. So we made the decision to borrow the money to pay for the surgery. Going into significant debt to try and do what we can for our son. And we did this without ever considering asking for help.
Until recently. For the longest time we have counted our blessings - Grateful for what we have knowing that there are others in the world that need the money more than us. That will always be the case. But recently a family member reached out to us and we were extremely moved by their offer to help and their generosity So we decided to put our pride aside, for the sake of our son, our family and our future, and open up the giving opportunity to our friends and family. Maybe you can help - whether it’s with money or words or prayers. We gratefully receive it all. Thank you.
Money raised will help cover the cost of Oliver’s surgery, his ongoing rehab after the surgery, specialized therapy equipment at home which amounts to tens of thousands of dollars. Oliver will need to learn how to use muscles that he isn’t aware of yet, so he has a lot of work ahead of him. So do his mom and dad!!!
So again, thank you for taking time to read our story and for your thoughts, and positive energy. We look forward to keeping you posted on our exciting journey ahead.
With love and gratitude,
Angela, Pieter, June and Oliver
Organizer
Angela Demeester
Organizer
Mississauga, ON
