Keep Corbin Rollin Wheelchair Fund
Donation protected
My son Corbin will be 14 years old in a week. Corbin has several health issues that he was born with that have left him unable to walk long distances.
Corbin was born with a heart defect called Patent Ductus Arteriosus. At the age of one, when the doctors went into fix his heart, Corbin was diagnosed with a rare and progressive lung disease called Pulmonary Hypertension. The doctor estimated he would live three years. At the time, not a lot was known about the disease. He has beat the odds. The doctors followed him and his health for several years and when he was five, they gave us a clean bill of health.
Fast forward to 2012. Corbin's pediatrician heard a heart murmur and sent us back to see the pediatric specialist at our local children's hospital. Our worst fears were confirmed when we were told the Pulmonary Hypertension was not only back, it had never went away.
Pulmonary Hypertension is high blood pressure in the arteries of the lungs. This high blood pressure means the heart has to work harder to move the blood, which eventually leads to right heart failure, and death. Corbin's PH was caused by his heart defect, but there are several different reasons people can have PH.
Symptoms of PH may include:
Breathlessness
Chest pain (also called angina pectoris)
Dizziness
Fainting (also called syncope)
Loss of energy
Swelling of the arms, legs, ankles or abdomen (also called edema)
Dry cough
Raynaud’s phenomenon (chalky white or dusky blue fingers that may be painful and can sometimes be provoked by the cold)
In advanced stages of pulmonary hypertension, minimal activity may produce some or all of these symptoms. Patients in advanced stages may experience irregular heartbeat, a racing pulse, passing out and difficulty breathing at rest.
Because Corbin is non-verbal, it is impossible to know if some of these symptoms affect him. We are lucky in the fact that Corbin has never fainted because of his disease, but we never know when that could happen.
Corbin also has very severe autism. This impedes the treatment options available for his PH. Normally, for someone with as severe of PH as Corbin has, they would have been put on a continuous IV medication immediately, but because of Corbin's autism, this is not feasible. Corbin was on one medication to treat his PH until December of 2015 when they came out with another oral medication. Earlier this year Corbin had a right heart catheterization to check if the medication was working. Unfortunately we learned his disease has been progressing. He started a third oral medication in April. The medication has horrible side effects. Fortunately Corbin has yet to experience any side effects, but he is still at a very low dose. Every week his dose increases until we get to a dose where he is having side effects; then we back off for awhile.
Because of Corbin's PH, he gets tired very easily, especially when walking. Because of this, Corbin has been using a wheelchair for the last several years when we go out to do things in the community. His dependency on the wheelchair has increased as his disease has progressed.
Although Corbin has a wheelchair, his quality of life-and our quality of life as a family-has diminished due to the fact that we can only go so many places in a regular wheelchair. No longer can we go on hikes (there are a few trails around Oregon that are paved); places like the pumpkin patch and farms, the river, or onto the beach, and the beach is Corbin's favorite place in the world. The sound and motion of the waves has a calming effect on him which he has loved it since he was a baby. Up until a couple years ago, Corbin was strong enough to walk over the sand to the water, or small enough to be carried, but those are no longer options. As of recently we have been confined to the very few beaches in Oregon and Washington that allow cars to go on the beach, that way we can drive Corbin right up to the water. We also now need to find trails, lakes, and rivers that are wheelchair accessible, and there are very few.
We will use the money we are raising to purchase Corbin a Hippocampe All Terrain Wheelchair, with beach wheels. The cost of the wheelchair is about $4900. We have secured a grant of $1200 from an organization called Wheel to Walk, but are still in need of the rest of the money to purchase the wheelchair. This wheelchair with the beach wheels will allow us to take Corbin to the beach, out hiking on trails, to the river, and beyond. No longer will we be confined to the regular wheelchair accessible places because this all-terrain wheelchair has the capabilities to go over sand, dirt, gravel, and even in the water.
http://www.scooterdirect.com/hippocampe.html
The sooner we get the funds, the better, as summertime in Oregon is the prime time to enjoy the outdoors, but be assured that this is a gift that we will use year round.
As a public school teacher, I work really hard to provide for my family, but we are just not able to afford the cost of this wheelchair. The funding for this means so much to me, and our family, because it will allow us all more freedom to get out of the house and enjoy nature. As with any parent, I want to give my children as many experiences as possible. I just had a new baby, so this chair is important for her, too, because it will allow us to go out together as a family instead of possibly having to leaver her brother (Corbin) at home, or not going at all.
If you find you are able to donate to Corbin's wheelchair fund, please know that you will be making his quality of life, and our family's quality of life infinitely better. However you are able to help, even the smallest amount, my family and I will be forever grateful for your gift.
Corbin was born with a heart defect called Patent Ductus Arteriosus. At the age of one, when the doctors went into fix his heart, Corbin was diagnosed with a rare and progressive lung disease called Pulmonary Hypertension. The doctor estimated he would live three years. At the time, not a lot was known about the disease. He has beat the odds. The doctors followed him and his health for several years and when he was five, they gave us a clean bill of health.
Fast forward to 2012. Corbin's pediatrician heard a heart murmur and sent us back to see the pediatric specialist at our local children's hospital. Our worst fears were confirmed when we were told the Pulmonary Hypertension was not only back, it had never went away.
Pulmonary Hypertension is high blood pressure in the arteries of the lungs. This high blood pressure means the heart has to work harder to move the blood, which eventually leads to right heart failure, and death. Corbin's PH was caused by his heart defect, but there are several different reasons people can have PH.
Symptoms of PH may include:
Breathlessness
Chest pain (also called angina pectoris)
Dizziness
Fainting (also called syncope)
Loss of energy
Swelling of the arms, legs, ankles or abdomen (also called edema)
Dry cough
Raynaud’s phenomenon (chalky white or dusky blue fingers that may be painful and can sometimes be provoked by the cold)
In advanced stages of pulmonary hypertension, minimal activity may produce some or all of these symptoms. Patients in advanced stages may experience irregular heartbeat, a racing pulse, passing out and difficulty breathing at rest.
Because Corbin is non-verbal, it is impossible to know if some of these symptoms affect him. We are lucky in the fact that Corbin has never fainted because of his disease, but we never know when that could happen.
Corbin also has very severe autism. This impedes the treatment options available for his PH. Normally, for someone with as severe of PH as Corbin has, they would have been put on a continuous IV medication immediately, but because of Corbin's autism, this is not feasible. Corbin was on one medication to treat his PH until December of 2015 when they came out with another oral medication. Earlier this year Corbin had a right heart catheterization to check if the medication was working. Unfortunately we learned his disease has been progressing. He started a third oral medication in April. The medication has horrible side effects. Fortunately Corbin has yet to experience any side effects, but he is still at a very low dose. Every week his dose increases until we get to a dose where he is having side effects; then we back off for awhile.
Because of Corbin's PH, he gets tired very easily, especially when walking. Because of this, Corbin has been using a wheelchair for the last several years when we go out to do things in the community. His dependency on the wheelchair has increased as his disease has progressed.
Although Corbin has a wheelchair, his quality of life-and our quality of life as a family-has diminished due to the fact that we can only go so many places in a regular wheelchair. No longer can we go on hikes (there are a few trails around Oregon that are paved); places like the pumpkin patch and farms, the river, or onto the beach, and the beach is Corbin's favorite place in the world. The sound and motion of the waves has a calming effect on him which he has loved it since he was a baby. Up until a couple years ago, Corbin was strong enough to walk over the sand to the water, or small enough to be carried, but those are no longer options. As of recently we have been confined to the very few beaches in Oregon and Washington that allow cars to go on the beach, that way we can drive Corbin right up to the water. We also now need to find trails, lakes, and rivers that are wheelchair accessible, and there are very few.
We will use the money we are raising to purchase Corbin a Hippocampe All Terrain Wheelchair, with beach wheels. The cost of the wheelchair is about $4900. We have secured a grant of $1200 from an organization called Wheel to Walk, but are still in need of the rest of the money to purchase the wheelchair. This wheelchair with the beach wheels will allow us to take Corbin to the beach, out hiking on trails, to the river, and beyond. No longer will we be confined to the regular wheelchair accessible places because this all-terrain wheelchair has the capabilities to go over sand, dirt, gravel, and even in the water.
http://www.scooterdirect.com/hippocampe.html
The sooner we get the funds, the better, as summertime in Oregon is the prime time to enjoy the outdoors, but be assured that this is a gift that we will use year round.
As a public school teacher, I work really hard to provide for my family, but we are just not able to afford the cost of this wheelchair. The funding for this means so much to me, and our family, because it will allow us all more freedom to get out of the house and enjoy nature. As with any parent, I want to give my children as many experiences as possible. I just had a new baby, so this chair is important for her, too, because it will allow us to go out together as a family instead of possibly having to leaver her brother (Corbin) at home, or not going at all.
If you find you are able to donate to Corbin's wheelchair fund, please know that you will be making his quality of life, and our family's quality of life infinitely better. However you are able to help, even the smallest amount, my family and I will be forever grateful for your gift.
Organizer
Gillian Murr
Organizer
Portland, OR
