Letter from Johnny and Debbie

January 27, 2008

To Whom It May Concern:

Hello, my name is Debbie Miller. The information below will describe ALS (commonly referred to as Lou Gehrig’s disease), and the importance of proper treatment to help manage the symptoms of ALS. This letter is written in hope to raise your awareness of ALS and to assist me in providing funding for my husband, John Miller’s care so that I can fulfill his wished that he be cared for at his home.

Amyotrophic lateral sclerosis (ALS) 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.

As the weakening and paralysis continue to spread to the muscles of the trunk of the body the disease, eventually affects speech, swallowing, chewing and breathing. When the breathing muscles become affected, ultimately, the patient will need permanent respiratory support in order to survive.

John has reached a point where he requires the use of a ventilator which he has. John was diagnosed with ALS in February of 2005. He had an injury in October because of "drop-foot", causing him to fall and fracture an orbit, shoulder, wrist and hand and suffered a hematoma on the left side of the skull. He was recovering well after a 32-day stay in the hospital. He was home for a period of 10 days when he suffered a heart attack on November 26th. Since the heart attack, he has required the use of the ventilator and now we are trying to wean him off of that.

While there is no cure for amyotrophic lateral sclerosis (ALS), treatment and appropriate care can help maintain John’s quality of life, manage his symptoms, and avoid complications for as long as possible. ALS has placed extreme physical, emotional and financial burdens on me and my family. Six months after John's diagnosis, I was forced to give up my full time career to care for him myself 24/7. Being his only caregiver for this long I have helped with some expenses, and the last year's medical demands have consumed all of my savings and nearly all of his. My daughter Shannon ( John's Step Daughter 16yrs. ) is too young to help financially and my son Ryan ( John's Step son 26yrs ) is maxed also financially from doing his best to help and lives in Tampa with his wife, Lisa. They cannot leave their full time careers to come to Fort Lauderdale to help on a permanent basis. John's birth family lives out of state and has not availed themselves to help. Granting me this financial support will aid in relieving stress and caregiver burnout by providing relief and enabling proper care for my husband. This is crucial for maintaining a productive and healthy lifestyle.

John has been blessed to have the option to choose to utilize technology to assist him in living beyond respiratory failure on a ventilator. Along with this right we have the responsibility to plan for the cost of care because neither the federal and state government nor community resources cover the cost of the care of persons on invasive ventilation. Nursing homes in Florida seldom provide long term care to adults with tracheotomies on a ventilator. With Medicare covering very few days in the facility, I am required to pay the rest out of pocket, in which I simply do not have enough funds to do so. As I have promised my husband that I will bring him home, upon discharge I will still need to plan to have several family members trained to provide care at home or I will need to plan to finance the cost of nursing care at home, at least 8-12 hours a day. The cost of a vent nurse is estimated to be $35-60 an hour. The biggest obstacle that I am faced with is locating the funds to ensure that I am able to maintain John’s quality of life. For the next full year it will require an estimated $150,000 to maintain John’s quality of care at home. A donation of any amount would be of great value in giving my husband some quality of life.

As persons with ALS often struggle to find an adequate amount of funding for professional care; authorizing this donation to assist me in providing proper care, will relieve the financial burdens that I am faced with as the primary caregiver, a daily basis.

Thank you for your time. God bless you,


Debbie Miller

Psalm 103 - Praise the LORD, O my soul, and forget not all his benefits, who forgives all your sins and heals all your diseases, who redeems your life from the pit, and crowns you with love and compassion, who satisfies your desires with good things so that your youth is renewed like the eagle's. The LORD works righteousness and justice for all the oppressed. The LORD is compassionate and gracious, slow to anger, abounding in love.

100%of the funds collected go directly to John and Debbie Miller to help in their financial battle with ALS. To follow John’s progress visit http://johnmilleralsfund.blogspot.com.
Make Checks payable to John Lodge Miller ALS Medical Trust Account:

Wachovia Bank
John L. Miller ALS Medical Trust Fund Account
Galt Ocean Mile Financial Center
3600 North Ocean Blvd.
Fort Lauderdale, FL 33308
(954) 468-2840