GLUT1 Cure on behalf of Grady Downs
Donation protected
To our friends and family, Jena Downs and want to share some sad news about our son, Grady. Over the last month Grady has underwent many medical tests at the Children's Hospital of MN and now at the Mayo Clinic. It has been the hardest few months of our lives and it seems our difficult journey is just beginning.
Two weeks ago, Grady was diagnosed with GLUT1 Deficiency which is a very rare genetic disease. The disease prohibits his brain from growing or developing due to the lack of glucose being provided to fuel his brain. It provides him with a disability that prohibits his cognitive and physical development. Many of these kids/adults have a difficult time walking, talking, and keeping up in school. Mild to severe seizures are also common. If you have interest in knowing more of his disability you can go to www.g1dfoundation.org
The main treatment for Grady is to go on a diet called the Ketogenic diet. It is a diet that his high in fat, moderate protein and very low carbs. Grady will never taste a cookie, ice cream, cake, pizza and all the other foods that contain carbs or sugar. The Ketogenic diet is not a cure, it is a treatment for him and there is no guarantee that it will stop seizures or the other challenges.
This is difficult for Jena and I to accept but we must. He is our son and we love him no matter what. He is a sweet and innocent little boy and doesn't deserve this. His life will bring more challenges than most kids will ever face but he will always have us. Jena and I will always be there for him no matter what, and if there is a silver lining in any of this, it is that our family has become closer. Our parents have been wonderful in supporting us and we know we are not alone with the great friends and family we have.
Lastly, there is a cure for GLUT1 but unfortunately the funding to push it forward through the FDA is not there. It is estimated that $3 Million is needed to get this to clinical trials. I am confident that Grady will have a cure in his lifetime.
I am swallowing my pride to ask that you honor my son by donating on behalf of him. You can also donate to the foundation by going to the website for the GLUT1 Foundation directly and clicking on the donate link and that will provide a receipt for a charitable contribution.
If you cannot donate (and even if you can) please say a prayer for my family. We all need it. We need the strength from our friends and family to carry us through this.
R & J
Two weeks ago, Grady was diagnosed with GLUT1 Deficiency which is a very rare genetic disease. The disease prohibits his brain from growing or developing due to the lack of glucose being provided to fuel his brain. It provides him with a disability that prohibits his cognitive and physical development. Many of these kids/adults have a difficult time walking, talking, and keeping up in school. Mild to severe seizures are also common. If you have interest in knowing more of his disability you can go to www.g1dfoundation.org
The main treatment for Grady is to go on a diet called the Ketogenic diet. It is a diet that his high in fat, moderate protein and very low carbs. Grady will never taste a cookie, ice cream, cake, pizza and all the other foods that contain carbs or sugar. The Ketogenic diet is not a cure, it is a treatment for him and there is no guarantee that it will stop seizures or the other challenges.
This is difficult for Jena and I to accept but we must. He is our son and we love him no matter what. He is a sweet and innocent little boy and doesn't deserve this. His life will bring more challenges than most kids will ever face but he will always have us. Jena and I will always be there for him no matter what, and if there is a silver lining in any of this, it is that our family has become closer. Our parents have been wonderful in supporting us and we know we are not alone with the great friends and family we have.
Lastly, there is a cure for GLUT1 but unfortunately the funding to push it forward through the FDA is not there. It is estimated that $3 Million is needed to get this to clinical trials. I am confident that Grady will have a cure in his lifetime.
I am swallowing my pride to ask that you honor my son by donating on behalf of him. You can also donate to the foundation by going to the website for the GLUT1 Foundation directly and clicking on the donate link and that will provide a receipt for a charitable contribution.
If you cannot donate (and even if you can) please say a prayer for my family. We all need it. We need the strength from our friends and family to carry us through this.
R & J
Organizer
Ryan Downs
Organizer
Nisswa, MN
