–Update September 29, 2009 – Anthony’s appeal was denied and as of 3pm today, his nurses were pulled from his case. If anyone can help, please help! –
–Update September 28, 2009 – Anthony’s situation is still very precarious. It is possible he may lose his coverage in the next 10 days. If you can help and bring attention to his cause, please do anything you can!–
Almost a year ago, I met a very sweet gentleman online. We got to talking and slowly became closer and closer friends. It wasn’t until months later that he told me had ALS – Lou Gehrig’s Disease. His name is Anthony. I believe the reason he took awhile to tell me about his disease is because he wants people to get to know him for who he really is, for the real person inside. With or without the disease – I consider him to be one of the greatest friends I’ve ever had.
That’s the thing with Anthony – he is not just his disease. He is just like anyone else. He has family and friends. He has likes and dislikes. He has good days and bad days. He has dreams and passions and desires. He is brilliant and funny and sweet. He reaches out to people and makes friends. Every day.
I traveled 1,000 miles to visit him not once, but twice this summer! I am proud and happy to call him my friend, and cannot wait to visit him again.
Anthony was diagnosed with ALS in 1997 – when he was only 29. The prognosis for ALS patients is usually 2-5 years from diagnosis. He has been living with the disease for about 12 years now. Over the years he has lost the use of his limbs. He is paralyzed from the neck down, but still has full sensation. He can use his computer and keep in contact with the entire world with the help of a headtrack that moves the cursor with his head movements. Anthony cannot swallow, eat, or breathe on his own for very long. He lives his day-to-day life with the help of friends, family, and 24 hour nurse care in his home. He is on a ventilator and feeding tube, and has to have suction of his lungs every several hours. Patients with ALS usually die of respiratory infection and failure. The fact that he has made it 12 years with this disease is a testament to his spirit and strength.
