Noah Matters

Noah once announced to his mom and me "I matter!"    We smiled with him and replied "more than you know."

 

Noah once announced to his mom and me "I matter" We smiled with him and replied "more than you know"

On January 3,2011 Noah was a healthy active and intelligent 6 year old boy. He played soccer, enjoyed swimming and karate classes. He was a grade 1 student at St. Mary’s of the Angels School. His little sister's guardian and best friend. Kind hearted, loved to laugh and tell jokes.  So energetic and full of life with  an army of friends....  

............Noah, the best son we could ever have wished for. 

On the morning of January 9, 2011 our lives changed. Our healthy very active six year old boy became very sick. It came without cause or warning.

Noah developed Idiopathic Refractory Status Epilepticus. It is very rare and very hard to understand. 

Idiopathic is an adjective used primarily in medicine meaning arising spontaneously or from an obscure or unknown cause. 

Refractory is an adjective that means, hard or impossible to manage; stubbornly disobedient; resisting ordinary methods of treatment. 

Status Epilepticus is a life threatening condition in which the brain is in a state of persistent seizure. Definitions vary, but traditionally it is defined as one continuous unremitting seizure lasting longer than 30 minutes, or recurrent seizures without regaining consciousness between seizures for greater than 30 minutes. It is always considered a medical emergency.

Idiopathic Refractory Status Epilepticus is not Noah's diagnosis. It is a condition resulting from an unknown mystery disease that the medical community has only recently named, Febrile infection-related epilepsy syndrome (FIRES).  Noah is not the only child with this illness. There are cases reported around the globe in children between the ages of 3-15.  As with Noah it is almost always preceded by flue like symptoms and stubborn high grade fever lasting from 3 to 5 days.

Noah went to bed On January 8, 2011 a healthy happy kid. He was read a story, tucked in and kissed goodnight. He had big expectations for the next day. Noah has not been responsive since that night.

911 -  ambulance took Noah to our local hospital York Central where he was quickly assessed treated for his seizures and transported to Toronto Sick Kids Hospital.

Noah went through extensive and evasive testing, you name it, he was tested. All results came back negative always negative. Noah’s first brain scans showed a healthy undamaged brain.  Noah  was also initially treated with broad spectrum antibiotics, steroids, blood products, and even chemotherapy.  Even though they couldn't find a cause they treated for every possibility.  All through this testing Noah was also being treated for the seizures.  High doses of multiple anti-seizure medications could not stop the seizure activity.  Special diets and vitamins were tried to no avail. Noah has been under a drug induced coma and then under a seizure induced coma. 

We were told to expect the worst, we prayed for the best.

It was the last week of February 2011, when his doctors told us that Noah would never wake up.  We were also told that there was nothing else, medically that they could do for him.

 “It would be futile to continue treatment,” they said.

We did not agree with these doctors, so  we advocated for further treatment and for Noah’s life. As a result Noah received a tracheotomy to assist in his breathing,  a G – Tube insertion for his nourishment,  a PIC line to deliver IV drugs and a VNS implant to hopefully reduce his seizures. The chief of neurology became Noah’s main physician and he began adjusting Noah’s anti convulsion drugs. All this transpired in the month of March 2011.

Noah has also suffered the usual complications that are expected with long hospital stays, chest infections, c-diff, pneumonia, urinary tract infections, collapsed lungs, rashes, bloating and stiff joints. At one point his liver also started to show strains of his treatments. We are still looking for answers and when new test become available Noah is on the list.. Many doctors in Canada the United States, Asia and Europe have been contacted. As of this update June 9, 2012, nothing has come back positive. So far only God knows .

On August  8, 2011 after a  7 month stay at Sick Kids Hospital Critical Care Unit in Toronto. Noah was transferred to Holland Bloorview Kids Rehabilitation Hospital.

Noah is currently on several anti-conversant medications, all of which are sedating.  Noah is no longer in a coma, but he is still unresponsive.  His seizures have slowed down, but they are still debilitating and constant throughout his cycles. Noah has also developed many complications which are credited to the brain damage caused by the seizures. Noah's vitals are not stable his heart rate, blood pressure and body temperature could be at extreme lows or highs at any given point of the day or night.

 Noah is on a ventilator 24/7 he was off for up to 12 hours but he digressed after a bout with pneumonia in march of 2012.  Noah a spends a good part of his day sitting up in a wheel chair. He opens his eyes but is not tracking us yet (following with his eyes.) Noah attends school in a classroom setting at Holland Bloorview and the plan is to have him in a community school once he is home.

We continue to pray for positive progress.

Please pray with us!

All faiths are welcome.

Pray for Noah's brain, lungs, liver, hearing, vision and total overall healing. Pray for the seizures to stop and for Noah to wake up and to have full use of all his senses, organs and limbs. Pray for Noah to return to the way he was before he got sick.

Send lots of positive energy and the light of Jesus.

There is strength in numbers and if we all pray together we believe that God will grant Noah the Miracle he needs. We truly believe this.

Noah matters as all God’s children matter.Noah once announced to his mom and me "I matter" We smiled with him and replied "more than you know"

On January 3,2011 Noah was a healthy active and intelligent 6 year old boy. He played soccer, enjoyed swimming and karate classes. He was a grade 1 student at St. Mary’s of the Angels School. His little sister's guardian and best friend. Kind hearted, loved to laugh and tell jokes.  So energetic and full of life with  an army of friends....  

............Noah, the best son we could ever have wished for. 

On the morning of January 9, 2011 our lives changed. Our healthy very active six year old boy became very sick. It came without cause or warning.

Noah developed Idiopathic Refractory Status Epilepticus. It is very rare and very hard to understand. 

Idiopathic is an adjective used primarily in medicine meaning arising spontaneously or from an obscure or unknown cause. 

Refractory is an adjective that means, hard or impossible to manage; stubbornly disobedient; resisting ordinary methods of treatment. 

Status Epilepticus is a life threatening condition in which the brain is in a state of persistent seizure. Definitions vary, but traditionally it is defined as one continuous unremitting seizure lasting longer than 30 minutes, or recurrent seizures without regaining consciousness between seizures for greater than 30 minutes. It is always considered a medical emergency.

Idiopathic Refractory Status Epilepticus is not Noah's diagnosis. It is a condition resulting from an unknown mystery disease that the medical community has only recently named, Febrile infection-related epilepsy syndrome (FIRES).  Noah is not the only child with this illness. There are cases reported around the globe in children between the ages of 3-15.  As with Noah it is almost always preceded by flue like symptoms and stubborn high grade fever lasting from 3 to 5 days.

Noah went to bed On January 8, 2011 a healthy happy kid. He was read a story, tucked in and kissed goodnight. He had big expectations for the next day. Noah has not been responsive since that night.

911 -  ambulance took Noah to our local hospital York Central where he was quickly assessed treated for his seizures and transported to Toronto Sick Kids Hospital.

Noah went through extensive and evasive testing, you name it, he was tested. All results came back negative always negative. Noah’s first brain scans showed a healthy undamaged brain.  Noah  was also initially treated with broad spectrum antibiotics, steroids, blood products, and even chemotherapy.  Even though they couldn't find a cause they treated for every possibility.  All through this testing Noah was also being treated for the seizures.  High doses of multiple anti-seizure medications could not stop the seizure activity.  Special diets and vitamins were tried to no avail. Noah has been under a drug induced coma and then under a seizure induced coma. 

We were told to expect the worst, we prayed for the best.

It was the last week of February 2011, when his doctors told us that Noah would never wake up.  We were also told that there was nothing else, medically that they could do for him.

 “It would be futile to continue treatment,” they said.

We did not agree with these doctors, so  we advocated for further treatment and for Noah’s life. As a result Noah received a tracheotomy to assist in his breathing,  a G – Tube insertion for his nourishment,  a PIC line to deliver IV drugs and a VNS implant to hopefully reduce his seizures. The chief of neurology became Noah’s main physician and he began adjusting Noah’s anti convulsion drugs. All this transpired in the month of March 2011.

Noah has also suffered the usual complications that are expected with long hospital stays, chest infections, c-diff, pneumonia, urinary tract infections, collapsed lungs, rashes, bloating and stiff joints. At one point his liver also started to show strains of his treatments. We are still looking for answers and when new test become available Noah is on the list.. Many doctors in Canada the United States, Asia and Europe have been contacted. As of this update June 9, 2012, nothing has come back positive. So far only God knows .

On August  8, 2011 after a  7 month stay at Sick Kids Hospital Critical Care Unit in Toronto. Noah was transferred to Holland Bloorview Kids Rehabilitation Hospital.

Noah is currently on several anti-conversant medications, all of which are sedating.  Noah is no longer in a coma, but he is still unresponsive.  His seizures have slowed down, but they are still debilitating and constant throughout his cycles. Noah has also developed many complications which are credited to the brain damage caused by the seizures. Noah's vitals are not stable his heart rate, blood pressure and body temperature could be at extreme lows or highs at any given point of the day or night.

 Noah is on a ventilator 24/7 he was off for up to 12 hours but he digressed after a bout with pneumonia in march of 2012.  Noah a spends a good part of his day sitting up in a wheel chair. He opens his eyes but is not tracking us yet (following with his eyes.) Noah attends school in a classroom setting at Holland Bloorview and the plan is to have him in a community school once he is home.

We continue to pray for positive progress.

Please pray with us!

All faiths are welcome.

Pray for Noah's brain, lungs, liver, hearing, vision and total overall healing. Pray for the seizures to stop and for Noah to wake up and to have full use of all his senses, organs and limbs. Pray for Noah to return to the way he was before he got sick.

Send lots of positive energy and the light of Jesus.

There is strength in numbers and if we all pray together we believe that God will grant Noah the Miracle he needs. We truly believe this.

Noah matters as all God’s children matter.

 

Noah once announced to his mom and me "I matter" We smiled with him and replied "more than you know"

On January 3,2011 Noah was a healthy active and intelligent 6 year old boy. He played soccer, enjoyed swimming and karate classes. He was a grade 1 student at St. Mary’s of the Angels School. His little sister's guardian and best friend. Kind hearted, loved to laugh and tell jokes.  So energetic and full of life with  an army of friends....  

............Noah, the best son we could ever have wished for. 

On the morning of January 9, 2011 our lives changed. Our healthy very active six year old boy became very sick. It came without cause or warning.

Noah developed Idiopathic Refractory Status Epilepticus. It is very rare and very hard to understand. 

Idiopathic is an adjective used primarily in medicine meaning arising spontaneously or from an obscure or unknown cause. 

Refractory is an adjective that means, hard or impossible to manage; stubbornly disobedient; resisting ordinary methods of treatment. 

Status Epilepticus is a life threatening condition in which the brain is in a state of persistent seizure. Definitions vary, but traditionally it is defined as one continuous unremitting seizure lasting longer than 30 minutes, or recurrent seizures without regaining consciousness between seizures for greater than 30 minutes. It is always considered a medical emergency.

Idiopathic Refractory Status Epilepticus is not Noah's diagnosis. It is a condition resulting from an unknown mystery disease that the medical community has only recently named, Febrile infection-related epilepsy syndrome (FIRES).  Noah is not the only child with this illness. There are cases reported around the globe in children between the ages of 3-15.  As with Noah it is almost always preceded by flue like symptoms and stubborn high grade fever lasting from 3 to 5 days.

Noah went to bed On January 8, 2011 a healthy happy kid. He was read a story, tucked in and kissed goodnight. He had big expectations for the next day. Noah has not been responsive since that night.

911 -  ambulance took Noah to our local hospital York Central where he was quickly assessed treated for his seizures and transported to Toronto Sick Kids Hospital.

Noah went through extensive and evasive testing, you name it, he was tested. All results came back negative always negative. Noah’s first brain scans showed a healthy undamaged brain.  Noah  was also initially treated with broad spectrum antibiotics, steroids, blood products, and even chemotherapy.  Even though they couldn't find a cause they treated for every possibility.  All through this testing Noah was also being treated for the seizures.  High doses of multiple anti-seizure medications could not stop the seizure activity.  Special diets and vitamins were tried to no avail. Noah has been under a drug induced coma and then under a seizure induced coma. 

We were told to expect the worst, we prayed for the best.

It was the last week of February 2011, when his doctors told us that Noah would never wake up.  We were also told that there was nothing else, medically that they could do for him.

 “It would be futile to continue treatment,” they said.

We did not agree with these doctors, so  we advocated for further treatment and for Noah’s life. As a result Noah received a tracheotomy to assist in his breathing,  a G – Tube insertion for his nourishment,  a PIC line to deliver IV drugs and a VNS implant to hopefully reduce his seizures. The chief of neurology became Noah’s main physician and he began adjusting Noah’s anti convulsion drugs. All this transpired in the month of March 2011.

Noah has also suffered the usual complications that are expected with long hospital stays, chest infections, c-diff, pneumonia, urinary tract infections, collapsed lungs, rashes, bloating and stiff joints. At one point his liver also started to show strains of his treatments. We are still looking for answers and when new test become available Noah is on the list.. Many doctors in Canada the United States, Asia and Europe have been contacted. As of this update June 9, 2012, nothing has come back positive. So far only God knows .

On August  8, 2011 after a  7 month stay at Sick Kids Hospital Critical Care Unit in Toronto. Noah was transferred to Holland Bloorview Kids Rehabilitation Hospital.

Noah is currently on several anti-conversant medications, all of which are sedating.  Noah is no longer in a coma, but he is still unresponsive.  His seizures have slowed down, but they are still debilitating and constant throughout his cycles. Noah has also developed many complications which are credited to the brain damage caused by the seizures. Noah's vitals are not stable his heart rate, blood pressure and body temperature could be at extreme lows or highs at any given point of the day or night.

 Noah is on a ventilator 24/7 he was off for up to 12 hours but he digressed after a bout with pneumonia in march of 2012.  Noah a spends a good part of his day sitting up in a wheel chair. He opens his eyes but is not tracking us yet (following with his eyes.) Noah attends school in a classroom setting at Holland Bloorview and the plan is to have him in a community school once he is home.

We continue to pray for positive progress.

Please pray with us!

All faiths are welcome.

Pray for Noah's brain, lungs, liver, hearing, vision and total overall healing. Pray for the seizures to stop and for Noah to wake up and to have full use of all his senses, organs and limbs. Pray for Noah to return to the way he was before he got sick.

Send lots of positive energy and the light of Jesus.

There is strength in numbers and if we all pray together we believe that God will grant Noah the Miracle he needs. We truly believe this.

Noah matters as all God’s children matter.

 Noah once announced to his mom and me "I matter" We smiled with him and replied "more than you know"

 

On January 3, 2011 Noah was a healthy active and intelligent 6 year old boy. He played soccer, enjoyed swimming and karate classes. He was a grade 1 student at St. Mary’s of the Angels School. Best friend and guardian of his little sister. Kind hearted, loved to laugh and tell jokes. So energetic and full of life with an army of friends.... 

............Noah, the best son we could ever have wished for.  

 

On the morning of January 9, 2011 our lives changed. Our healthy very active six year old boy became very sick. It came without cause or warning.

Noah developed Idiopathic Refractory Status Epilepticus. It is very rare and very hard to understand. 

Idiopathic is an adjective used primarily in medicine meaning arising spontaneously or from an obscure or unknown cause. 

Refractory is an adjective that means, hard or impossible to manage; stubbornly disobedient; resisting ordinary methods of treatment. 

Status Epilepticus is a life threatening condition in which the brain is in a state of persistent seizure. Definitions vary, but traditionally it is defined as one continuous unremitting seizure lasting longer than 30 minutes, or recurrent seizures without regaining consciousness between seizures for greater than 30 minutes. It is always considered a medical emergency.

Idiopathic Refractory Status Epilepticus is not Noah's diagnosis. It is a condition resulting from an unknown mystery disease that the medical community has only recently named:
 

Noah is not the only child with this illness. There are cases reported around the globe in children between the ages of 3-15. As with Noah it is almost always preceded by flue like symptoms and stubborn high grade fever lasting from 3 to 5 days.

Noah went to bed On January 8, 2011 a healthy happy kid. He was read a story, tucked in and kissed goodnight. He had big expectations for the next day. Noah has not been responsive since that night.

911 - ambulance took Noah to our local hospital York Central where he was quickly assessed treated for his seizures and transported to Toronto Sick Kids Hospital.

Noah went through extensive and evasive testing, you name it, he was tested. All results came back negative always negative. Noah’s first brain scans showed a healthy undamaged brain. Noah was also initially treated with broad spectrum antibiotics, steroids, blood products, and even chemotherapy. Even though they couldn't find a cause they treated for every possibility. All through this testing Noah was also being treated for the seizures. High doses of multiple anti-seizure medications could not stop the seizure activity. Special diets and vitamins were tried to no avail. Noah has been under a drug induced coma and then under a seizure induced coma. 

We were told to expect the worst, we prayed for the best.

It was the last week of February 2011, when his doctors told us that Noah would never wake up. We were also told that there was nothing else, medically that they could do for him.

“It would be futile to continue treatment,” they said.

We did not agree with these doctors, so we advocated for further treatment and for Noah’s life. As a result Noah received a tracheotomy to assist in his breathing, a G – Tube insertion for his nourishment, a PIC line to deliver IV drugs and a VNS implant to hopefully reduce his seizures. The chief of neurology became Noah’s main physician and he began adjusting Noah’s anti convulsion drugs. All this transpired in the month of March 2011.

Noah has also suffered the usual complications that are expected with long hospital stays, chest infections, c-diff, pneumonia, urinary tract infections, collapsed lungs, rashes, bloating and stiff joints. At one point his liver also started to show strains of his treatments. We are still looking for answers and when new test become available Noah is on the list. Many doctors in Canada the United States, Asia and Europe have been contacted. 

On August 8, 2011 after a 7 month stay at Sick Kids Hospital Critical Care Unit in Toronto. Noah was transferred to Holland Bloorview Kids Rehabilitation Hospital.

Noah is currently on several anti-conversant medications, all of which are sedating. Noah is no longer in a coma, but he is still unresponsive. His seizures have slowed down, but they are still debilitating and constant throughout his cycles. Noah has also developed many complications which are credited to the brain damage caused by the seizures. Noah's vitals are not stable his heart rate, blood pressure and body temperature could be at extreme lows or highs at any given point of the day or night.

Noah is on a ventilator 24/7 he was off for up to 12 hours but he digressed after a bout with pneumonia in march of 2012. Noah a spends a good part of his day sitting up in a wheel chair. He opens his eyes but is not tracking us yet (following with his eyes.) Noah attends school in a classroom setting at Holland Bloorview and the plan is to have him in a community school once he is home.

We continue to pray for positive progress.

Please pray with us!

All faiths are welcome.

Pray for Noah's brain, lungs, liver, hearing, vision and total overall healing. Pray for the seizures to stop and for Noah to wake up and to have full use of all his senses, organs and limbs. Pray for Noah to return to the way he was before he got sick.

Send lots of positive energy and the light of Jesus.

There is strength in numbers and if we all pray together we believe that God will grant Noah the Miracle he needs. We truly believe this.

Noah matters as all God’s children matter.