Connors Quest
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Meet Connor ......
Smart ...funny... strong... warrior ...passionate
These are just a few words to describe this amazing boy. He is a typical 6 year old boy in that he loves his superheroes (Thor is his favourite) playing with LEGO , dressing up as all different superhero’s , enjoys playing with his friends and being social. Connor also happens to have cerebral palsy CP that he will live with the rest of his life.
Cerebral palsy is the number one physical disability in children and is often a result of a brain injury around the time of birth. Connor was born 13 weeks premature at 27 weeks gestation, weighing only 2.7 lbs (1100g) and began his journey in neonatal intensive care unit (NICU). The very first few days were very scary as doctors were uncertain if he would survive the first 48 hrs. His lungs were so underdeveloped he was placed on an oscillator jet to help him breathe over the next couple of weeks. During this time Connor wasn’t able to be held and touching was to be at a minimum because of how sensitive his skin was. During this time doctors were keeping, a close eye on his head circumference as the size of his head was growing faster then it should have. After many head ultrasounds, it was discovered Connor had suffered bilateral grade 3&4 brain bleeds resulting in hydrocephalus. Hydrocephalus is a condition in which an accumulation of cerebrospinal fluid occurs within the brain. This typically causes increased pressure inside the skull. It was determined that Connor would need surgery to place a VP shunt to help with the draining of the fluid buildup due to the hydrocephalus. The the major concern was he was still too little and weak to undergo such a surgery and doctors decided it was best to continue to monitor his head circumference on Week to week basis until he was both strong and big enough to undergo the surgery. Just over a month, after he was born Connor was transferred to sick kids hospital where he was to have brain surgery to have a VP shunt placed but a week before his surgery date Connor got very sick and it was discovered he had developed necrotizing enterocolitis (“NEC”) which can be deadly for premature babies. “NEC” is a devastating disease that affects mostly the intestine of premature infants. Bacteria invade the wall of the intestine, which causes local infection and inflammation that can ultimately destroy the wall of the bowel. Luckily, the nurses and doctors at Sick Kids Hospital discovered this quick enough and it was able to be treated with just medication. Finally, after 120 days in the NICU Connor was finally well enough to be able to come home!
Due to Connor born prematurely he was placed on waiting lists for early intervention as he was a much higher risk for having CP. when Connor was 8 months old he started physiotherapy and occupational therapy. At 12 months, he was diagnosed with right side Hemiplegia cerebral palsy meaning the right side of his body is effected by spasticity. Messages from damaged parts of his brain are causing his muscles to continuously contract, which is spasticity. He refers to his right hand and leg as his “weaker” ones. Every time he grows it’s a challenge to keep his tight spastic muscles stretched enough to keep up with his growing bones and hopefully prevent deformities and contracture for s long as possible.
Over the last 6 years, Connor has had countless hours of physio/occupational therapy and other therapies, being fitted for AFOs (ankle foot orthotics) and painful Botox injections (to weaken the spastic muscles). Even with all these therapies and treatments Connor still needs assistance doing regular day today tasks, such going up and downstairs, walking on uneven surfaces, and his balance is also affected. Even at 6 years old, he is starting to notice the difference between himself and other kids his age. He is unable to run or jump like other kids his age and he gets very frustrated and often asks why he cannot do what they do. As he gets older these differences in abilities between him and other children his age will only get bigger.
People with CP age early, live with chronic pain and develop joint deformities over time. Even children considered “mild” like Connor will see their mobility decline in the teens, 20s or 30s.
As like any parent, our sons’ future and quality of life are always on our minds. Although it seems so far away grownup CP issues are a major concern for us as we want him to live the best possible pain free and independent life he can. As he gets older and the increasing limits to his mobility and his realization of his differences of them are daily reminders of the obstacles that still face him currently and in the future are a struggle.
Connor has been accepted for a surgery called selective dorsal rhizotomy (SDR) which is performed by renowned neurosurgeon Dr. Park at St. Louis children’s hospital. This surgery will dramatically change Connors life in the best way possible.
Connor has been beating the odds from the beginning and does so with a smile on his face, he is a fighter, warrior and he does not let anything stop him or get in his way. Miracles really do happen and Connor is one of those miracles.
Item - Cost (CDN)
Treatment in St. Louis
SDR Surgery & in hospital recovery
$ 65,000.00
PERCS (orthopedic surgery)*
$ 16,000.00
Mobility equipment (braces, walkers, crutches etc.)
$ 8,000.00
Travel Expenses and Accommodation in St. Louis
$ 11,000.00
Pre/Post-Operative Therapy
$ 35,000.00
TOTAL
$ 135,000.00
Follow my webpage - https://connorsquest.wixsite.com/mysite
Meet Connor ......
Smart ...funny... strong... warrior ...passionate
These are just a few words to describe this amazing boy. He is a typical 6 year old boy in that he loves his superheroes (Thor is his favourite) playing with LEGO , dressing up as all different superhero’s , enjoys playing with his friends and being social. Connor also happens to have cerebral palsy CP that he will live with the rest of his life.
Cerebral palsy is the number one physical disability in children and is often a result of a brain injury around the time of birth. Connor was born 13 weeks premature at 27 weeks gestation, weighing only 2.7 lbs (1100g) and began his journey in neonatal intensive care unit (NICU). The very first few days were very scary as doctors were uncertain if he would survive the first 48 hrs. His lungs were so underdeveloped he was placed on an oscillator jet to help him breathe over the next couple of weeks. During this time Connor wasn’t able to be held and touching was to be at a minimum because of how sensitive his skin was. During this time doctors were keeping, a close eye on his head circumference as the size of his head was growing faster then it should have. After many head ultrasounds, it was discovered Connor had suffered bilateral grade 3&4 brain bleeds resulting in hydrocephalus. Hydrocephalus is a condition in which an accumulation of cerebrospinal fluid occurs within the brain. This typically causes increased pressure inside the skull. It was determined that Connor would need surgery to place a VP shunt to help with the draining of the fluid buildup due to the hydrocephalus. The the major concern was he was still too little and weak to undergo such a surgery and doctors decided it was best to continue to monitor his head circumference on Week to week basis until he was both strong and big enough to undergo the surgery. Just over a month, after he was born Connor was transferred to sick kids hospital where he was to have brain surgery to have a VP shunt placed but a week before his surgery date Connor got very sick and it was discovered he had developed necrotizing enterocolitis (“NEC”) which can be deadly for premature babies. “NEC” is a devastating disease that affects mostly the intestine of premature infants. Bacteria invade the wall of the intestine, which causes local infection and inflammation that can ultimately destroy the wall of the bowel. Luckily, the nurses and doctors at Sick Kids Hospital discovered this quick enough and it was able to be treated with just medication. Finally, after 120 days in the NICU Connor was finally well enough to be able to come home!
Due to Connor born prematurely he was placed on waiting lists for early intervention as he was a much higher risk for having CP. when Connor was 8 months old he started physiotherapy and occupational therapy. At 12 months, he was diagnosed with right side Hemiplegia cerebral palsy meaning the right side of his body is effected by spasticity. Messages from damaged parts of his brain are causing his muscles to continuously contract, which is spasticity. He refers to his right hand and leg as his “weaker” ones. Every time he grows it’s a challenge to keep his tight spastic muscles stretched enough to keep up with his growing bones and hopefully prevent deformities and contracture for s long as possible.
Over the last 6 years, Connor has had countless hours of physio/occupational therapy and other therapies, being fitted for AFOs (ankle foot orthotics) and painful Botox injections (to weaken the spastic muscles). Even with all these therapies and treatments Connor still needs assistance doing regular day today tasks, such going up and downstairs, walking on uneven surfaces, and his balance is also affected. Even at 6 years old, he is starting to notice the difference between himself and other kids his age. He is unable to run or jump like other kids his age and he gets very frustrated and often asks why he cannot do what they do. As he gets older these differences in abilities between him and other children his age will only get bigger.
People with CP age early, live with chronic pain and develop joint deformities over time. Even children considered “mild” like Connor will see their mobility decline in the teens, 20s or 30s.
As like any parent, our sons’ future and quality of life are always on our minds. Although it seems so far away grownup CP issues are a major concern for us as we want him to live the best possible pain free and independent life he can. As he gets older and the increasing limits to his mobility and his realization of his differences of them are daily reminders of the obstacles that still face him currently and in the future are a struggle.
Connor has been accepted for a surgery called selective dorsal rhizotomy (SDR) which is performed by renowned neurosurgeon Dr. Park at St. Louis children’s hospital. This surgery will dramatically change Connors life in the best way possible.
Connor has been beating the odds from the beginning and does so with a smile on his face, he is a fighter, warrior and he does not let anything stop him or get in his way. Miracles really do happen and Connor is one of those miracles.
Item - Cost (CDN)
Treatment in St. Louis
SDR Surgery & in hospital recovery
$ 65,000.00
PERCS (orthopedic surgery)*
$ 16,000.00
Mobility equipment (braces, walkers, crutches etc.)
$ 8,000.00
Travel Expenses and Accommodation in St. Louis
$ 11,000.00
Pre/Post-Operative Therapy
$ 35,000.00
TOTAL
$ 135,000.00
Organizer
Kirstin Ciampaglia for Connor Ciampaglia
Organizer
Oshawa, ON