Hospice Patients Alliance: Consumer Advocacy




THE STORY OF A FATHER'S LOVE FOR HIS DISABLED SON



Prepared by Lisa Wilson, M.S.
March 30, 2005


         Steve (Istvan) Sakac from Fairfax, Virginia is the father of Tony Sakac. Tony, at age 16, used to travel the country and speak to groups of teenagers about the wonderful relationship he had with his father. Tony, now 31, became ill at the age of 16 when he went on a school field trip. When he came home from this trip he complained of ear pain, sore throat, headache, dizziness and tiredness.

        The first doctor to see Tony said he had a minor flu. Three days later his condition had worsened, so father and son returned to the hospital. The second doctor looked at Tony for five minutes, said that Tony had the flu, and sent them home.

        The third day after this visit Tony was a lot worse and was walking as if he were drunk. The third doctor consulted at another hospital also claimed Tony had a bad flu. Steve challenged this diagnosis and demanded they admit Tony to the hospital and run some tests to determine what was wrong. The doctor got so upset that he threw the pair out of the hospital with the help of four policemen.

        The next morning, November 10, 1990, at 8:00 am, Tony had a seizure and was taken to the hospital in an ambulance. He continued to have seizures for four days. After four weeks, two doctors and a lawyer told Steve, "We're sorry but your son is brain dead and a vegetable. He has about one week to live, and we would like you to sign this paper so that his organs can be harvested to save lives."

        Tony's father became angry, thinking of how they had been thrown out of the hospital, and now he was being asked to donate his son's organs! Everyone except for Steve had totally given up on Tony.

        Steve stayed with his son day and night, never leaving his bedside. He requested a temporary feeding tube (naso-gastric) be inserted to make it easier for him to care for Tony by himself, and after six months he took Tony home. Upon discharge the doctor said to give Tony only water and Ensure, eight cans a day and NOTHING ELSE. This regimen was followed for 2½ years, while Tony remained like a vegetable. Since this was clearly not working, Steve started him on real food, which he pureed and put in the feeding tube. Meanwhile, Steve gradually eliminated Tony's tranquilizers and eight different medications.

        Tony showed immediate improvement, and on May 20, 1993, he stood up for 3½ hours with the help of a tilt table. This table was donated by a dear woman who herself had been severely injured. Tony's improvement accelerated as his father exercised his arms and legs with range of motion therapy for 3½ hours a day. This therapy is performed from 11 p.m. to 4 a.m. every night because Steve has determined that this is the best time of the day for Tony's brain development.

        On July 11, 1994, Tony was so much better that he was able to stand with the assistance of crutches. Then after a month of standing with crutches, his left knee became swollen to twice its normal size. After going to over 20 different hospitals, the only remedy suggested was to not have Tony stand up. This was unacceptable to Steve. Father and son went across the United States in search of braces and other equipment to assist the younger man. Medicare and insurance issued a denial of benefits because the neurologist said he shouldn't be stood up, so therefore, he didn't need braces.

        Since having the braces, Tony has improved greatly. He likes to stand for hours at a time, sometimes 8-9 hours a day. He is also taking steps. Steve would like to do more, but the neurologist has classified Tony as brain dead.

        He is not brain dead and that is why Steve is pleading with our President to review our public policy when it comes to classifying and caring for our handicapped, injured, retarded and disabled citizens.

STEVE'S TALKING POINTS FOR THE PRESS:

Steve was desperate to be interviewed and shown with his son on national television from Pinellas Park, Florida before Terri Schiavo-Schindler died. He felt that if Americans saw Tony and heard their story that Terri would have her feeding tube put back in the next day. He said, "I guarantee results!" But alas, he did not get his wish to be interviewed on national television and Terri passed away the next day. The following would have been Steve's talking points for his interview:

1. President Bush, Governor Bush, Congress and the American People; The reason why I came all the way to Florida from Fairfax, Virginia not knowing how I was going to pay my expenses, was to show you that my son is NOT brain-dead or in a vegetative state and neither is Terri Schiavo.

2. I can't work because I care for my son full-time. He has been disabled for 15 years. His mother left him when he was 2 months old and I was left to care for our 3 sons.

3. If Michael Schiavo really loved Terri he would be taking care of her like I am taking care of my son. Tell him to divorce her and I will marry her and take care of her!!!

4. Because of misdiagnosis, I can't get Medicare or my insurance to pay for the things Tony must have to continue his needed therapy. He was diagnosed as PVS (persistent vegetative state) 15 years ago and they won't pay to have him re-evaluated even though he is now in a minimally conscious state, which allows Medicare to pay for therapy. To re-evaluate him, a doctor must observe him for 8 hours straight, and they won't do it.
        
5. Why are we paying for the health care of foreigners in this country and we let our own people go without the necessary treatment they need?

6. I want to caution everyone to be very careful and investigate as much as possible before they accept as fact any diagnosis or implement any treatment prescribed by their doctor.

Note from Steve: Our country, the USA, brings over very sick people from foreign countries whom U.S. doctors try to help for free, to save their lives, to get them braces and help, room and board and everything for free, while many American disabled citizens get no care. This is extremely unfair.

If you have any questions or would like further information, please feel free to contact
Steve, (Istavan) Sakac, Tel. 703-577-4626, P.O. Box 2594, Fairfax VA 22031


Note: Prepared by Lisa Wilson, M.S. St. Topeka, KS Thanks to Donna Rodgers, Atlanta GA, and Judith Goldsberry, M.A., Clearwater FL for typing and editing. We are referring to Terri as Terri Schindler since her passing at the direction of Monsignor Malanowski who said she is out of Michael's control now and back with her parents.






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