Donation protected
Hello our names are Amanda and Tom.
We wanted to tell you how our lives were forever changed this past September when our four year old son, Gavin was diagnosed with MPS II. MPS II (Hunter Syndrome) is a genetic progressive disease caused by the accumulation of glycosaminoglycans (GAGs) in the cells of the body. In other words, he lacks an enzyme, iduronate-2-fulfatase, that prevents sugar molecules from being broken down in the tissues. This build-up of toxic GAGs causes irreparable damage to the body organs and leads to premature death, often in the first or second decade of life.
Babies may show little sign of the disease, but as more and more cells become damaged, symptoms start to appear.
Symptoms of this condition include:
- Delayed / impaired development
- Joint stiffness
- Respiratory, cardiac, skeletal and connective tissue complications as well as brain and nervous system degeneration.
Children are normally diagnosed between the ages of 2 and 4 years old.
There is no cure, but treatments such as enzyme replacement therapies can help make the disease more manageable and slow down the progression. Since Gavin’s condition is severe, it requires him to spend at least one day a week (6-8 hours) in the hospital to get IV infusion treatments. He will have to do this weekly treatment for the rest of his life along with physical, occupational and speech therapies in order to give Gavin the best quality of life as possible.
These treatments cost anywhere from $300,000–$500,000 a year which is not completely covered by health insurance.
We humbly extend our gratitude for any donation you can spare to help Gavin fight this terrible disease.
Please keep us in your thoughts and prayers. Thank you from the bottom of our hearts.
PS: Also I've attached a short video that explains what Hunter syndrome is for anyone who would like to learn more.
https://youtu.be/JnH2VlaS5gg
We wanted to tell you how our lives were forever changed this past September when our four year old son, Gavin was diagnosed with MPS II. MPS II (Hunter Syndrome) is a genetic progressive disease caused by the accumulation of glycosaminoglycans (GAGs) in the cells of the body. In other words, he lacks an enzyme, iduronate-2-fulfatase, that prevents sugar molecules from being broken down in the tissues. This build-up of toxic GAGs causes irreparable damage to the body organs and leads to premature death, often in the first or second decade of life.
Babies may show little sign of the disease, but as more and more cells become damaged, symptoms start to appear.
Symptoms of this condition include:
- Delayed / impaired development
- Joint stiffness
- Respiratory, cardiac, skeletal and connective tissue complications as well as brain and nervous system degeneration.
Children are normally diagnosed between the ages of 2 and 4 years old.
There is no cure, but treatments such as enzyme replacement therapies can help make the disease more manageable and slow down the progression. Since Gavin’s condition is severe, it requires him to spend at least one day a week (6-8 hours) in the hospital to get IV infusion treatments. He will have to do this weekly treatment for the rest of his life along with physical, occupational and speech therapies in order to give Gavin the best quality of life as possible.
These treatments cost anywhere from $300,000–$500,000 a year which is not completely covered by health insurance.
We humbly extend our gratitude for any donation you can spare to help Gavin fight this terrible disease.
Please keep us in your thoughts and prayers. Thank you from the bottom of our hearts.
PS: Also I've attached a short video that explains what Hunter syndrome is for anyone who would like to learn more.
https://youtu.be/JnH2VlaS5gg
Organizer
Amanda Meinke
Organizer
Joliet, IL