Zachary's fight against Hunter Syndrome
Donation protected
A week ago we found out that our son, Zachary, has a rare genetic disorder called Hunter Syndrome. Our lives have been completely changed since that phone call.
There currently is no cure for this disease. We are thankful there is treatment to help slow down the progression of the disease but this involves a weekly IV enzyme replace therapy (ERT) treatment for the rest of his life or until another treatment or cure is found. This medicine, Elaprase, is the 2nd most expensive medicine in the world. We do not know what his medical bills will be like yet as he doesn't start his treatment for another 2 weeks. So far he also has to have Physical, Occupation and Speech therapy. He has to go for an MRI, ECHO and a surgery to insert a venous port so that administering this medicine is easier on him as well. These tests will more than likely have to be done on a yearly basis.
Zachary is such a sweet and loving boy. He loves to fish, bowl and go to Chuck e Cheese. He loves playing games and playing with his brother and cousins. We have no idea what the future holds and it is a scary thing. We just want to be able to help our son in any way we can. Any money donated will go to his medical bills, research for better treatment, research for a cure and towards things that give him joy.
There currently is no cure for this disease. We are thankful there is treatment to help slow down the progression of the disease but this involves a weekly IV enzyme replace therapy (ERT) treatment for the rest of his life or until another treatment or cure is found. This medicine, Elaprase, is the 2nd most expensive medicine in the world. We do not know what his medical bills will be like yet as he doesn't start his treatment for another 2 weeks. So far he also has to have Physical, Occupation and Speech therapy. He has to go for an MRI, ECHO and a surgery to insert a venous port so that administering this medicine is easier on him as well. These tests will more than likely have to be done on a yearly basis.
Zachary is such a sweet and loving boy. He loves to fish, bowl and go to Chuck e Cheese. He loves playing games and playing with his brother and cousins. We have no idea what the future holds and it is a scary thing. We just want to be able to help our son in any way we can. Any money donated will go to his medical bills, research for better treatment, research for a cure and towards things that give him joy.
Organizer
Melanie Majkrzak
Organizer
