Help Save Joshua's Life!
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Hello everyone,
For those of you who do not know me, I am Chris Cogswell and I am from Wyalusing Pennsylvania. I feel gofundme should be used for extreme cases and I believe that my family is in a situation that needs financial support from as many people as possible.
My cousin Tammy Armitage has a young boy name Joshua Douglas, who from birth has had many medical challenges. These challenges and procedures I will list below. I realize that many of the medical terms may be hard to follow. Please read !!!!
Joshua was born with HLHS.
Hypoplastic left heart syndrome (HLHS) is a birth defect that affects normal blood flow through the heart. As the baby develops during pregnancy, the left side of the heart doesn't form correctly.
Hypoplastic left heart syndrome affects a number of structures on the left side of the heart that do not fully develop, for example:
The left ventricle is underdeveloped and too small.
The mitral valves is not formed or is very small.
The aortic valve is not formed or is very small.
The ascending portion of the aorta is underdeveloped or is too small.
Often, babies with hypoplastic left heart syndrome also have an Atrial Septal Defect which is a hole between the left and right upper chambers of the heart
Soon after a baby with hypoplastic left heart syndrome is born, multiple surgeries done in a particular order are needed to increase blood flow to the body and bypass the poorly functioning left side of the heart. The right ventricle becomes the main pumping chamber to the body. These surgeries do not cure hypoplastic left heart syndrome, but help restore heart function. Sometimes medicines are given to help treat symptoms of the defect before or after surgery. Surgery for hypoplastic left heart syndrome usually is done in three separate stages:
These are the stages Joshua had done in order to save his life when he was born.
Norwood Procedure
Was done within the first 2 weeks of after he was born. Surgeons created a “new” aorta and connected it to the right ventricle. They place a tube from either the aorta or the right ventricle to the vessels supplying the lungs. Thus, the right ventricle can pump blood to both the lungs and the rest of the body. This can be a very challenging surgery. After this procedure, an infant’s skin still might look bluish because oxygen-rich and oxygen-poor blood still mix in the heart.
Bi-directional Glenn Shunt Procedure
Next procedure performed was at 5 months of age. This procedure creates a direct connection between the pulmonary artery and the vessel returning oxygen-poor blood from the upper part of the body to the heart. This reduces the work the right ventricle has to do by allowing blood returning from the body to flow directly to the lungs.
Fontan Procedure
This procedure was done - usually done sometime during the period when an infant is 18 months to 3 years of age. Doctors connected the pulmonary artery and the vessel returning oxygen-poor blood from the lower part of the body to the heart, allowing the rest of the blood coming back from the body to go to the lungs. Once this procedure was completed, oxygen-rich and oxygen-poor blood no longer mix in the heart and an infant’s skin will no longer look bluish.
Infants who have these surgeries are not cured; they may have lifelong complications.
Josh requires regular follow-up visits with his cardiologist and CHOP(Children's Hospital of Philadelphia) team of specialists to monitor his progress. If the hypoplastic left heart syndrome defect is very complex, or the heart becomes weak after the surgeries, a heart transplant may be needed. Joshua has not needed a heart transplant but has had several admissions to CHOP for various complications
The latest complication started with a lingering cough, shortness of breath, tiredness, low oxygen level. An admission to CHOP revealed Josh now has plastic bronchitis. This is yet another very rare condition.
Plastic bronchitis is an extremely rare and potentially fatal complication after a Fontan procedure that Josh has had. Symptoms include violent coughing, wheezing, and episodes of severe dyspnea. IT is characterized by expectoration of long, branching bronchial casts and can manifest with recurrent life threatening airway obstruction. The pathogenesis of this condition is not entirely clear. Contributing roles of elevated pulmonary venous pressure, increased central venous pressure, and endobronchial lymphatic leakage have been proposed. Various treatment modalities including thoracic duct ligation and cardiac transplantation have been proposed.
Josh is on a strict regimen of medication, nebulizer treatments and use of a percussion vest. This is an airway clearance device used 4 times a day along with the nebulizer treatments throughout the day and the medications.
Josh had to have prior approval for the expensive medications (which have to be prepared and shipped to his home kept frozen), nebulizer treatments and the percussion vest. Seemingly approved, the insurance company is now telling his parents they will be responsible for $18,000 for the percussion vest. This is the very treatment that is helping Josh survive this rare disease.
Children's Hospital of Philadelphia and Cardiologist Dr. Finnerty of Elmira, NY maintain Josh's care. And credit to Children's Hospital in Ann Arbor, MI who also performed one of his heart surgeries.
Josh just graduated from the 6th grade and received an award for Spirit of Adventure for pushing the boundaries to succeed, keeping a health attitude without fear of failure.
After an extended hospital stay he returned home but had to be schooled at home. He so wanted to be with his friends and was finally allowed to attend school a few days a week for about 3 hours a day. When he was granted approval to attend school his cardiologist set limitations and asked if he could do steps. He told him no, that was kind of hard for him to do. He said it made him short of breath, tired. So the Dr. told him he would have to use the elevator. "Oh no" replied Joshua. "That is saved for kids that are really sick"!
Josh indicated that he is not afraid to die but really doesn't want to die now. The vest is important to his life!
As of today July 26, 2015, Joshua only has 10 days left before the company will come and take the vest, which is basically the only thing keeping him alive.
I am not asking the World to help save what means the world to my cousin Tammy; her son Joshua.
Please help me save my cousin's little boy! Share this with as many people as you can.
Thank you so much for all of your support!
Chris Cogswell
For those of you who do not know me, I am Chris Cogswell and I am from Wyalusing Pennsylvania. I feel gofundme should be used for extreme cases and I believe that my family is in a situation that needs financial support from as many people as possible.
My cousin Tammy Armitage has a young boy name Joshua Douglas, who from birth has had many medical challenges. These challenges and procedures I will list below. I realize that many of the medical terms may be hard to follow. Please read !!!!
Joshua was born with HLHS.
Hypoplastic left heart syndrome (HLHS) is a birth defect that affects normal blood flow through the heart. As the baby develops during pregnancy, the left side of the heart doesn't form correctly.
Hypoplastic left heart syndrome affects a number of structures on the left side of the heart that do not fully develop, for example:
The left ventricle is underdeveloped and too small.
The mitral valves is not formed or is very small.
The aortic valve is not formed or is very small.
The ascending portion of the aorta is underdeveloped or is too small.
Often, babies with hypoplastic left heart syndrome also have an Atrial Septal Defect which is a hole between the left and right upper chambers of the heart
Soon after a baby with hypoplastic left heart syndrome is born, multiple surgeries done in a particular order are needed to increase blood flow to the body and bypass the poorly functioning left side of the heart. The right ventricle becomes the main pumping chamber to the body. These surgeries do not cure hypoplastic left heart syndrome, but help restore heart function. Sometimes medicines are given to help treat symptoms of the defect before or after surgery. Surgery for hypoplastic left heart syndrome usually is done in three separate stages:
These are the stages Joshua had done in order to save his life when he was born.
Norwood Procedure
Was done within the first 2 weeks of after he was born. Surgeons created a “new” aorta and connected it to the right ventricle. They place a tube from either the aorta or the right ventricle to the vessels supplying the lungs. Thus, the right ventricle can pump blood to both the lungs and the rest of the body. This can be a very challenging surgery. After this procedure, an infant’s skin still might look bluish because oxygen-rich and oxygen-poor blood still mix in the heart.
Bi-directional Glenn Shunt Procedure
Next procedure performed was at 5 months of age. This procedure creates a direct connection between the pulmonary artery and the vessel returning oxygen-poor blood from the upper part of the body to the heart. This reduces the work the right ventricle has to do by allowing blood returning from the body to flow directly to the lungs.
Fontan Procedure
This procedure was done - usually done sometime during the period when an infant is 18 months to 3 years of age. Doctors connected the pulmonary artery and the vessel returning oxygen-poor blood from the lower part of the body to the heart, allowing the rest of the blood coming back from the body to go to the lungs. Once this procedure was completed, oxygen-rich and oxygen-poor blood no longer mix in the heart and an infant’s skin will no longer look bluish.
Infants who have these surgeries are not cured; they may have lifelong complications.
Josh requires regular follow-up visits with his cardiologist and CHOP(Children's Hospital of Philadelphia) team of specialists to monitor his progress. If the hypoplastic left heart syndrome defect is very complex, or the heart becomes weak after the surgeries, a heart transplant may be needed. Joshua has not needed a heart transplant but has had several admissions to CHOP for various complications
The latest complication started with a lingering cough, shortness of breath, tiredness, low oxygen level. An admission to CHOP revealed Josh now has plastic bronchitis. This is yet another very rare condition.
Plastic bronchitis is an extremely rare and potentially fatal complication after a Fontan procedure that Josh has had. Symptoms include violent coughing, wheezing, and episodes of severe dyspnea. IT is characterized by expectoration of long, branching bronchial casts and can manifest with recurrent life threatening airway obstruction. The pathogenesis of this condition is not entirely clear. Contributing roles of elevated pulmonary venous pressure, increased central venous pressure, and endobronchial lymphatic leakage have been proposed. Various treatment modalities including thoracic duct ligation and cardiac transplantation have been proposed.
Josh is on a strict regimen of medication, nebulizer treatments and use of a percussion vest. This is an airway clearance device used 4 times a day along with the nebulizer treatments throughout the day and the medications.
Josh had to have prior approval for the expensive medications (which have to be prepared and shipped to his home kept frozen), nebulizer treatments and the percussion vest. Seemingly approved, the insurance company is now telling his parents they will be responsible for $18,000 for the percussion vest. This is the very treatment that is helping Josh survive this rare disease.
Children's Hospital of Philadelphia and Cardiologist Dr. Finnerty of Elmira, NY maintain Josh's care. And credit to Children's Hospital in Ann Arbor, MI who also performed one of his heart surgeries.
Josh just graduated from the 6th grade and received an award for Spirit of Adventure for pushing the boundaries to succeed, keeping a health attitude without fear of failure.
After an extended hospital stay he returned home but had to be schooled at home. He so wanted to be with his friends and was finally allowed to attend school a few days a week for about 3 hours a day. When he was granted approval to attend school his cardiologist set limitations and asked if he could do steps. He told him no, that was kind of hard for him to do. He said it made him short of breath, tired. So the Dr. told him he would have to use the elevator. "Oh no" replied Joshua. "That is saved for kids that are really sick"!
Josh indicated that he is not afraid to die but really doesn't want to die now. The vest is important to his life!
As of today July 26, 2015, Joshua only has 10 days left before the company will come and take the vest, which is basically the only thing keeping him alive.
I am not asking the World to help save what means the world to my cousin Tammy; her son Joshua.
Please help me save my cousin's little boy! Share this with as many people as you can.
Thank you so much for all of your support!
Chris Cogswell
Organizer and beneficiary
Chris Cogswell
Organizer
Ravenna, OH
Tammy Armitage
Beneficiary