Steve's Fight Against ALS Fund
The reality is our time as a family is running out and we need this help now.
This page was created with the intent to collect as many donations as possible to help Steve and our family defray the huge medical bills as well as help our family to take care of normal bills plus get a very much needed Home Standby Natural Gas Generator along with the cost of it's Installation and Handicap wheelchair Van. If our power goes out so does his BiPap Breathing Machine, Cough Assist Machine, Electric Hospital Bed that keeps his head up to help him breathe all cease to work and he dies.
Also if the power goes out the Power Wheelchair won't charge and he is even more helpless in an emergency to get out.
We also desperately need a Handicap Accessible Wheelchair Van for Steve's Power Wheelchair to get him to and from his doctors appoints at Johns Hopkins which is over an hour from our house.
The average expense for a person living with ALS is about $100,000.00 a year and that is just for the "EXTRA'S' not covered by insurance such Batteries for his BiPap Breathing machine which are $500.00 and not covered because they are considered a LUXURY ITEM by the insurance company, Modifications he needs added to his Power Wheelchair but are not covered and right now would cost $2,000.00 plus copay's and so on. If the are on a ventillator then it goes up to $500,000.00 a year which is not covered by insurance if they chose to live at home and not in a hospital facility.
This does not include any handicap alterations to a home or any gaget's or technology to help him talk or to use his computer to make life just a bit easier for him.
We've had to use our savings to have our home made handicap accessible for him with things like a rollin shower, ramps and much more, because of this and huge medical bills which keep coming we don't have enough left for the much needed and very costly Natural Gas Generator for our home and it's installation or the much needed Handicap Accessible Wheelchair Van to get Steve to and from his doctors appointmants at Johns hopkins or anywhere.
If we did I would not be asking for your help, now.
Steve is a fighter, with all the ALS Ice Bucket Challenge's going on, Steve wanted to get involved for a specific ALS cause, his and our family's.
Steve did the ALS Ice Bucket Challenge as did I and our daughter.
Steve's ALS Ice Bucket Video can be seen at the link below:
Steve's ALS Ice Bucket Challenge Video
A little about Steve:
My husband Stephen Rodolff was diagnosed with ALS
(Lou Gehrig's Disease) on February 10, 2014.
When he was diagnosed Steve was 6'1" tall and 248 pounds and his breathing level was 79 percent out of 100 percent, since then his weight has dropped to 184 pounds which is all muscle loss and his breathing level dropped in July to 49 percent.
He now needs a BiPap Machine to breathe and an Assistive Cough Machine to help him cough and clear his throat.
He had a feeding tube placed into his stomache in July because of problems swollowing and he has difficulty using his hands.
He can no longer walk, stand get dressed or do anything on his own. I must use Hoyer Lift to move him and he needs his power wheelchair to get around in the house and everywhere.
Steve is a wonderful man, very sweet, kind, and caring. He is also my loving husband of 27 years and wonderful dad to our daughter and was always a wonderful provider for our family.
I am my husbands primary caregiver along with our teen daughter and we do this out of our tremendous love for him.
We are very private people and don't like asking for help, we have always tried to be the ones helping others but we are now in a very desperate situation and I am asking for your help, and support during this difficult time, thank you.
Very respectfully,
Trish Rodolff
For people who don't know about ALS, here is my short explanation of this beyond horrific disease:
People with ALS are able to continue to think and use their brain as usual so they know everything that's going on. They're bodies become their prison as their muscles waste away to nothing.
Eventually they become completely helpless and dependant on others as they become more and more paralyzed and eventually die.
Simple Explination of ALS From The ALS Association:
What is ALS?-Amyotrophic lateral sclerosis (ALS), often referred to as "Lou Gehrig's Disease," is a progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord. Motor neurons reach from the brain to the spinal cord and from the spinal cord to the muscles throughout the body. The progressive degeneration of the motor neurons in ALS eventually leads to their death.
When the motor neurons die, the ability of the brain to initiate and control muscle movement is lost. With voluntary muscle action progressively affected, patients in the later stages of the disease may become totally paralyzed.
