Medical Expenses for Weston Zahl
Donation protected
Since May 2015, Weston Emmitt Zahl is in ongoing testing to find the cause of extreme hepatosplenomegaly (enlarged liver & spleen), hence his "Buddha" belly.
We are coming to the end of the list and facing a medical diagnosis of Niemann-Pick Type C. This disease is rare, and inherited. It occurs in about 1-1,000,000 with a prognosis of 10-12 years of age if early onset.
Niemann Pick is a lysosomal storage disease, and there are about 60-100 of these disease. They are all rare and all life threatening, mostly fatal. Professionals call it a lysosomal storage disease because a lysosome is a organelle in the cell that is responsible for making important and necessary enzymes to sustain life.
In Weston's case, he does not make the appropriate enzyme to break down cholesterol and some lipids, thus, the lysosome is not working correctly. This is the same type of disease as Tay-Sachs, which seems to be more heard of. Because of this "missing" enzyme, cholesterol accumulates in the liver, spleen, and brain.
We, his mother, Hilliarie Brooke Silcox and father Grant Herbert Zahl, have been investing our time into books, websites and treatments. As of now there is no treatments nor cures for Niemann Pick Type C. However, there is clinical trials on an orphan enzyme called Cyclodextrin. Treatments are hundreds of thousands of dollars.
We are trying to raise money for Weston to get him the care he ABSOLUTELY needs. I will not give up. I will fight this disease. This disease has never met a family like his!
If you have any questions feel free to contact us at any time.
Hilliarie Silcox
[email redacted]
509.200.0483
Grant Herbert Zahl
[email redacted]
509.386.6772
I have attached a link so that you can read more into Niemann Pick if you choose to. I also encourage you to "like" the Niemann Pick Awareness Facebook page. Many have lost their children and other have lost their lives to this horrible disease.
Below is also a X-ray of Weston's abdomen. The white mass, that is his liver.
www.nnpdf.org
We are coming to the end of the list and facing a medical diagnosis of Niemann-Pick Type C. This disease is rare, and inherited. It occurs in about 1-1,000,000 with a prognosis of 10-12 years of age if early onset.
Niemann Pick is a lysosomal storage disease, and there are about 60-100 of these disease. They are all rare and all life threatening, mostly fatal. Professionals call it a lysosomal storage disease because a lysosome is a organelle in the cell that is responsible for making important and necessary enzymes to sustain life.
In Weston's case, he does not make the appropriate enzyme to break down cholesterol and some lipids, thus, the lysosome is not working correctly. This is the same type of disease as Tay-Sachs, which seems to be more heard of. Because of this "missing" enzyme, cholesterol accumulates in the liver, spleen, and brain.
We, his mother, Hilliarie Brooke Silcox and father Grant Herbert Zahl, have been investing our time into books, websites and treatments. As of now there is no treatments nor cures for Niemann Pick Type C. However, there is clinical trials on an orphan enzyme called Cyclodextrin. Treatments are hundreds of thousands of dollars.
We are trying to raise money for Weston to get him the care he ABSOLUTELY needs. I will not give up. I will fight this disease. This disease has never met a family like his!
If you have any questions feel free to contact us at any time.
Hilliarie Silcox
[email redacted]
509.200.0483
Grant Herbert Zahl
[email redacted]
509.386.6772
I have attached a link so that you can read more into Niemann Pick if you choose to. I also encourage you to "like" the Niemann Pick Awareness Facebook page. Many have lost their children and other have lost their lives to this horrible disease.
Below is also a X-ray of Weston's abdomen. The white mass, that is his liver.
www.nnpdf.org
Organizer
Hilliarie Brooke
Organizer
Walla Walla, WA
