A Miracle for Baby Anthony

Hi Friends,  I want to share a story with you of a very good friend named Daniele Johnson and her young 3 mo old son named Anthony Schmitz. Baby Anthony was diagnosed with Spinal Muscular Atrophy Type 1. Thanks to a newborn screening they were able to find out   It's the deadliest neuromuscular disease known to man that effects children.   The mother came to learn her son had this deadly disease when they were in the  surgery waiting room as their son was having heart surgery to repair his Aortic valve This surgery was occurring on Sept.9 at Riley's Children's hospital in Indianapolis. If this mom wasn't stressed enough things took a very unexpected and bizarre turn to say the least.  After the doctor shares the diagnosis about this deadly disease  the Pediatric Neurologist tells mom its okay just to let your child die and not fight for him.  Lets stop and pause for a second and understand how wrong this is on so many levels.  Before the mother knew anything about the disease and its treatment she's told to let  her child die. How would you feel if this was your doctor??  The mother was furious and outraged at her comments.  Finally, the mother was to able to compose herself and read more about this disease.  She found out there was a drug out there called Zolgensma that could save  her young son's life.  She was elated to find this  out but the excitement was short lived when she found out the drug costs $2.1 million dollars. That was going to be a near impossible task to raise that kind of money.   The mom is insured through Indiana Medicaid.  After she found out about this life saving drug she asked her doctor to apply to Medicaid for the drug.  Believe it or not from Sept 9 to Oct 29 the doctor refused to apply and ask her insurance to approve the drug.  During this time without any treatment Anthony's respiratory system became weaker by the day.  During that time he was placed on a ventilator as he couldn't breath without it and would die.  Finally, the doctor relented after intense pressure  and applied for the drug.   The insurance came back with a denial on 11/26. Instead of filing an appeal right way this doctor waited 10 days until 12/5.  The longer we wait for him to get treated the worse it gets and he likely won't survive.  Most kids with this severe type of SMA don't live past 3 mos. of age. Just this week there was another scare when his right lung collapsed.   The funds are needed fast and urgently as he's also going to need a large amount of Physical therapy as he has no neuromuscular strength at all. The mother is also going to have a tremendous amount of medical bills piling up for her young son's care.  Please help  and donate with any amount you can and share this page as well.   Whatever they can raise will be more then they currently have thank you!!