Jamie's Story
If Jamie were here and verbal, he would be able to tell you his story. But, due to unforeseen circumstances, Jamie is no longer with us to tell his story so, I will.
My name is Michelle Cozzi, and I am proud to say, “I am Jamie’s mom.”
Jamie Anthony Cozzi entered the world on August 19, 1993 at 1:32p.m. Weighing in at 4lbs 12oz and 18 inches long. Someone once told me, “God makes no mistakes and our angel was born to us.” Jamie was very tiny, and fragile when he was born and was kept in the Neonatal Intensive Care Unit at Ingalls Memorial Hospital. One day later, On August 20th Jamie was going to have his first helicopter ride as he was being air lifted to Wyler’s University of Chicago because his sugar level dropped and there were other concerns with his development and health. Jamie wasn’t coming home with us, or to the room that was personalized just for him.
For the first 10 days at Wyler’s, Jamie spent his days with a feeding tube, as he lost all strength to suck, his weight was dropping, his heart had deformities, and he was jaundiced. During these ten days, and test after test, we were not sure Jamie was going to survive, but Jamie had a fight in him and had the will to live. The doctors told us that with all of Jamie’s issues he would not make it past the age of 5.
Jamie’s brain development was abnormal and was Agenesis (missing) of his corpus callosum. The corpus callosum is a bundle of fibers beneath the cortex and connects the left and the right sides of the brain, facilitating communication. Jamie had other brain abnormalities and coupled with missing his corpus callosum, this would cause him to be non- verbal and have what they call Autism or an Intellectual Disability. At birth, Jamie also had a kinked ureter that needed to be repaired. Jamie’s kidney issues needed attention but with his weight he would not be able to sustain the surgery at that time. We needed to wait until he was at least ten pounds and a little older.
So, at six months old Jamie went to have it repaired. During the surgery Jamie went into congestive heart failure. Needless to say, the surgery didn’t happen, and Jamie was placed in a drug induced coma for 10 days after that. To see all the tubes, and hearing the machines beeping, and looking at Jamie’s lifeless body was heart wrenching for all of us. While Jamie was on the ventilator, his body was resting. He was finally being weaned off and coming home. Thank God!
Jamie’s first year of life was difficult. The kidney surgery was successful at age one and was seen by many specialist after that. He was seen by a cardiologist for his mitro valve prolapse, a neurologist for his Autism, and an urologist for his kidney function. This poor kid was poked and prodded his entire life, but was a true champ through it all. By this time, some genetic testing was done and Jamie was diagnosed with Goldenhars Syndrome on top of Autism and an intellectual disability. Goldenhars Syndrome is a congenital birth defect which involves deformities of the face. Jamie had one ear microtia, a small mandible, and an odd shaped head.
After all of that, and life being somewhat normal, Jamie was enrolled in the 0-3 program through Easter Seals Early Intervention and began therapy at 2 years old. At the age of 3, I was told that Jamie would not be able to talk, crawl, walk, run, or jump. Jamie refused to use a small walker, and by age 5 a wheel chair was ordered. But through determination, hard work, and help from the family, Jamie persevered! He never sat in his customized wheel chair, and began to walk at age 5. Even though Jamie’s odds were placed against him at such an early age, he was beating the odds already.
As the years went on, Jamie grew. He got bigger and stronger. He enjoyed life as he knew it. By the time Jamie was 12 years old he was beginning his new journey residing at Kamp Cottage and going to school at Elim Christian Services. For the next 11 years, Jamie had many illnesses, and had numerous hospitalizations. Each time he was hospitalized we feared the unknown, but his life was speared each and every time. Jamie learned so much with his stay at Elim, he learned things that I would not have been able to teach him. Jamie was able to attend and enjoy 3 proms at Elim, and even participated in the Special Olympics every year. Jamie basically lived at Elim to get the education that he deserved and was home on the weekends.
Jamie enjoyed coming home to Wyoming as his love for animals was noticeable and vice versa. We called him the animal whisperer. Jamie loved helping with chores, feeding the dogs, cats, and most of all the horses. It was always busy here in Wyoming, and he kept us on our toes, and made us laugh at his silliness. Jamie had a personality that lit up the room, his smile was infectious, he loved unconditionally, and he thoroughly enjoyed the simplicities of life.
Jamie also enjoyed spending time with his dad. They took numerous train rides into downtown Chicago as Jamie absolutely loved trains. On the weekends that he was with his dad, they would always go and watch the trains pass by at a certain time and location.
In May of 2015, Jamie graduated from Elim Christian School. We were so proud of him, he worked so hard to get there. This was very hard for us, as our son was aging out, and Kamp Cottage was closing their doors. This meant we needed to work diligently on getting Jamie into an Adult CILA by June 2015. Through endless touring of homes, it was January 2015 when Easter Seals called me and said they had an opening in their Apple Tree house in Plainfield, Illinois and they would love to meet Jamie, have him spend the night to see if he was a good fit. Moving into a CILA meant changes for Jamie. One, he would have a little more independence but closely supervised as he needed a lot of assistance with toileting and such, and two, Jamie was a man! Jamie moved into his new home on Apple Tree Ln March 2015. It was a rough transition for him as the last 12 years was spent at Elim, this was all new to him. Jamie had an aura about him and a personality that was hard not to like. It didn’t take Jamie long to catch on to his new routine and make friends with everyone in his house.
Jamie loved his home, his caretakers, his friends, and his family. Unfortunately, Jamie passed away suddenly July 16th, 2016 at the age of 22 in the home he loved so much. Our hearts ache every day for Jamie. We all miss his smiling face, his belly laughs, his hugs, his kisses, his silliness, his unconditional love, and his love for life. Jamie persevered and beat the odds, and now his legacy will live on through the lives of others.
Please help and support our great cause, by donating to Jamie's Crew 22. Together we can empower and serve other children and adults like Jamie.
My name is Michelle Cozzi, and I am proud to say, “I am Jamie’s mom.”
Jamie Anthony Cozzi entered the world on August 19, 1993 at 1:32p.m. Weighing in at 4lbs 12oz and 18 inches long. Someone once told me, “God makes no mistakes and our angel was born to us.” Jamie was very tiny, and fragile when he was born and was kept in the Neonatal Intensive Care Unit at Ingalls Memorial Hospital. One day later, On August 20th Jamie was going to have his first helicopter ride as he was being air lifted to Wyler’s University of Chicago because his sugar level dropped and there were other concerns with his development and health. Jamie wasn’t coming home with us, or to the room that was personalized just for him.
For the first 10 days at Wyler’s, Jamie spent his days with a feeding tube, as he lost all strength to suck, his weight was dropping, his heart had deformities, and he was jaundiced. During these ten days, and test after test, we were not sure Jamie was going to survive, but Jamie had a fight in him and had the will to live. The doctors told us that with all of Jamie’s issues he would not make it past the age of 5.
Jamie’s brain development was abnormal and was Agenesis (missing) of his corpus callosum. The corpus callosum is a bundle of fibers beneath the cortex and connects the left and the right sides of the brain, facilitating communication. Jamie had other brain abnormalities and coupled with missing his corpus callosum, this would cause him to be non- verbal and have what they call Autism or an Intellectual Disability. At birth, Jamie also had a kinked ureter that needed to be repaired. Jamie’s kidney issues needed attention but with his weight he would not be able to sustain the surgery at that time. We needed to wait until he was at least ten pounds and a little older.
So, at six months old Jamie went to have it repaired. During the surgery Jamie went into congestive heart failure. Needless to say, the surgery didn’t happen, and Jamie was placed in a drug induced coma for 10 days after that. To see all the tubes, and hearing the machines beeping, and looking at Jamie’s lifeless body was heart wrenching for all of us. While Jamie was on the ventilator, his body was resting. He was finally being weaned off and coming home. Thank God!
Jamie’s first year of life was difficult. The kidney surgery was successful at age one and was seen by many specialist after that. He was seen by a cardiologist for his mitro valve prolapse, a neurologist for his Autism, and an urologist for his kidney function. This poor kid was poked and prodded his entire life, but was a true champ through it all. By this time, some genetic testing was done and Jamie was diagnosed with Goldenhars Syndrome on top of Autism and an intellectual disability. Goldenhars Syndrome is a congenital birth defect which involves deformities of the face. Jamie had one ear microtia, a small mandible, and an odd shaped head.
After all of that, and life being somewhat normal, Jamie was enrolled in the 0-3 program through Easter Seals Early Intervention and began therapy at 2 years old. At the age of 3, I was told that Jamie would not be able to talk, crawl, walk, run, or jump. Jamie refused to use a small walker, and by age 5 a wheel chair was ordered. But through determination, hard work, and help from the family, Jamie persevered! He never sat in his customized wheel chair, and began to walk at age 5. Even though Jamie’s odds were placed against him at such an early age, he was beating the odds already.
As the years went on, Jamie grew. He got bigger and stronger. He enjoyed life as he knew it. By the time Jamie was 12 years old he was beginning his new journey residing at Kamp Cottage and going to school at Elim Christian Services. For the next 11 years, Jamie had many illnesses, and had numerous hospitalizations. Each time he was hospitalized we feared the unknown, but his life was speared each and every time. Jamie learned so much with his stay at Elim, he learned things that I would not have been able to teach him. Jamie was able to attend and enjoy 3 proms at Elim, and even participated in the Special Olympics every year. Jamie basically lived at Elim to get the education that he deserved and was home on the weekends.
Jamie enjoyed coming home to Wyoming as his love for animals was noticeable and vice versa. We called him the animal whisperer. Jamie loved helping with chores, feeding the dogs, cats, and most of all the horses. It was always busy here in Wyoming, and he kept us on our toes, and made us laugh at his silliness. Jamie had a personality that lit up the room, his smile was infectious, he loved unconditionally, and he thoroughly enjoyed the simplicities of life.
Jamie also enjoyed spending time with his dad. They took numerous train rides into downtown Chicago as Jamie absolutely loved trains. On the weekends that he was with his dad, they would always go and watch the trains pass by at a certain time and location.
In May of 2015, Jamie graduated from Elim Christian School. We were so proud of him, he worked so hard to get there. This was very hard for us, as our son was aging out, and Kamp Cottage was closing their doors. This meant we needed to work diligently on getting Jamie into an Adult CILA by June 2015. Through endless touring of homes, it was January 2015 when Easter Seals called me and said they had an opening in their Apple Tree house in Plainfield, Illinois and they would love to meet Jamie, have him spend the night to see if he was a good fit. Moving into a CILA meant changes for Jamie. One, he would have a little more independence but closely supervised as he needed a lot of assistance with toileting and such, and two, Jamie was a man! Jamie moved into his new home on Apple Tree Ln March 2015. It was a rough transition for him as the last 12 years was spent at Elim, this was all new to him. Jamie had an aura about him and a personality that was hard not to like. It didn’t take Jamie long to catch on to his new routine and make friends with everyone in his house.
Jamie loved his home, his caretakers, his friends, and his family. Unfortunately, Jamie passed away suddenly July 16th, 2016 at the age of 22 in the home he loved so much. Our hearts ache every day for Jamie. We all miss his smiling face, his belly laughs, his hugs, his kisses, his silliness, his unconditional love, and his love for life. Jamie persevered and beat the odds, and now his legacy will live on through the lives of others.
Please help and support our great cause, by donating to Jamie's Crew 22. Together we can empower and serve other children and adults like Jamie.