Help Zachary Izon journey thru ALS
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This is for my husband ZACHARY IZON. Zac was diagnosed with ALS, LOU GHERIG'S Disease on May 10, 2012 (also known as (Motor Neuron disease in some countries). For more information on ALS please visit: alsa.org.
This horrible disease is fatal. After diagnosis patients typically live from 3-5 years. ALS causes all of the muscles in Zac's body to die. This includes the diaphragm which controls his breathing. He currently has a Bipa ( a non-invasive ventilator) machine which cost us $2,200. Thank God for family because they have been helping us financially when they can. Zac's insurance does not cover any durable goods he may need.
I have watched my husband go from a vibrant active man who loved playing all sorts of musical instruments to a man who no longer has the use of his arms and hands. His legs are slowly going too. A man who loved singing who now has unreconizable speech, can no longer write legibly, nor dress himself or prepare any food for himself each day. Because of ALS, Zac will soon have a feeding tub (PEG) surgecially inserted because he asparates when eating or drinking. This has lead to pneumonia, which has led to several hospitalizations.
Through all of this, Zac continues to go to work, all-be-it very part time, in order to continue to help provide for our family. His doctors are in awe of his stamina. When he can no longer work Social Security will pay him less than half of what he makes now. Medicare will cost us $107 a month and drug coverage will be another cost. Just one of his medicines costs $1299.00 a month and he takes several medications including breathing treatments four times a day. I believe he continues to work because of our living expenses. Our living expenses will not decrease but our income will. I currently work two jobs and am Zac's primary caregiver when I get home. All of these costs and whatever else is to come our way adds up quickly.
When Zac was first diagnosed it was important to do as much as he could before his condition worsened. So we used our retirement funds and my whole-life insurance policy for trips that Zac had on his bucket list. We visited the Air Museum in Washington, D.C., (he has always loved air planes), Senator Daniel Inoye's office (two months before he passed), and a long time friend in Washington State (his first band members). We have been to the Disney Aulani on Oahu thanks to family (they have a time share) and we will go one more time before the PEG goes in. Zac (with the help of our sons) wants to get in the water one last time with the grand kids. Family is so important to Zac and spending whatever time he has doing what he can is what keeps his spirits up.
As you can see the financial cost of ALS are astronomical and financially devastating. There are previous hospitalization bills we are currently trying to pay, the purchase of a Van to pay for because Zac could no longer get down into his car. Lovingly one of our sons took over the car and the payments to help us out. Now we have to purchase a trailor to transport his electric wheelchair and have that installed. And the expenses keep coming.
My hope as you read Zac's story is that you can find it in your heart to help us deal with the continuing financial burden of ALS, LOU GHERIG'S Disease.
We thank you in advance for any/all help you send our way and please feel free to share Zac's story with whoever you can.
Sincerely,
Mrs. Michelle Kantorowski Izon
Wife of 35 years with more to come I hope!
P.S. please read the updates which is where I will keep everyone posted on what is happening
This horrible disease is fatal. After diagnosis patients typically live from 3-5 years. ALS causes all of the muscles in Zac's body to die. This includes the diaphragm which controls his breathing. He currently has a Bipa ( a non-invasive ventilator) machine which cost us $2,200. Thank God for family because they have been helping us financially when they can. Zac's insurance does not cover any durable goods he may need.
I have watched my husband go from a vibrant active man who loved playing all sorts of musical instruments to a man who no longer has the use of his arms and hands. His legs are slowly going too. A man who loved singing who now has unreconizable speech, can no longer write legibly, nor dress himself or prepare any food for himself each day. Because of ALS, Zac will soon have a feeding tub (PEG) surgecially inserted because he asparates when eating or drinking. This has lead to pneumonia, which has led to several hospitalizations.
Through all of this, Zac continues to go to work, all-be-it very part time, in order to continue to help provide for our family. His doctors are in awe of his stamina. When he can no longer work Social Security will pay him less than half of what he makes now. Medicare will cost us $107 a month and drug coverage will be another cost. Just one of his medicines costs $1299.00 a month and he takes several medications including breathing treatments four times a day. I believe he continues to work because of our living expenses. Our living expenses will not decrease but our income will. I currently work two jobs and am Zac's primary caregiver when I get home. All of these costs and whatever else is to come our way adds up quickly.
When Zac was first diagnosed it was important to do as much as he could before his condition worsened. So we used our retirement funds and my whole-life insurance policy for trips that Zac had on his bucket list. We visited the Air Museum in Washington, D.C., (he has always loved air planes), Senator Daniel Inoye's office (two months before he passed), and a long time friend in Washington State (his first band members). We have been to the Disney Aulani on Oahu thanks to family (they have a time share) and we will go one more time before the PEG goes in. Zac (with the help of our sons) wants to get in the water one last time with the grand kids. Family is so important to Zac and spending whatever time he has doing what he can is what keeps his spirits up.
As you can see the financial cost of ALS are astronomical and financially devastating. There are previous hospitalization bills we are currently trying to pay, the purchase of a Van to pay for because Zac could no longer get down into his car. Lovingly one of our sons took over the car and the payments to help us out. Now we have to purchase a trailor to transport his electric wheelchair and have that installed. And the expenses keep coming.
My hope as you read Zac's story is that you can find it in your heart to help us deal with the continuing financial burden of ALS, LOU GHERIG'S Disease.
We thank you in advance for any/all help you send our way and please feel free to share Zac's story with whoever you can.
Sincerely,
Mrs. Michelle Kantorowski Izon
Wife of 35 years with more to come I hope!
P.S. please read the updates which is where I will keep everyone posted on what is happening
Organizer
Michelle Kantorowski Izon
Organizer
Wahiawā, HI
