Koehyns fight for ZOLGENSMA

HI Friends,  let me introduce you to Baby Koehyn. who  is 4 mos. old.  He is the baby of a wonderful mother named Mariah Cusick.  He was born on March 6  in Wheeling. W VA.  Things started out on a rough note for the baby as he was put on oxygen for 6 hours after being delivered by C Section  From all indications despite being born 3 weeks early he was a very healthy and a happy baby  He was able to go home for a month.  Mom was overjoyed at bringing another baby boy into this world to join her two other sons Kyllian who is 2 years old and  Kassyn who is 1.  The joy of her sons birth was very short lived.   Why was the joy short lived you might ask??  The joy was short lived because three weeks later she started to see very worrisome signs from watching her sweet baby boy.   Firstly, she noticed  her new pride and joy Koehyn was having problems holding his head up, abd  his breathing was very weak as his lungs weren't fully developed.  At first she was thinking these might be complications from his early birth.   As any mom would do she called her sons primary care physician to express her concerns.  Her sweet little Koehyn was due for his 1 month well checkup so she was hoping to get more answers.  After examining him he was concerned enough with what he saw to send her to the hospital.  Even though this doctor had no concrete idea what was happening he knew something wasn't right.   The doctor wanted to cross all his T's and dot all his I's and leave no stone unturned.  At the very least it would give her some comfort to know what was happening to her precious Koehyn.   They were admitted  to Ruby Memorial Hospital  on April 8 and stayed there until June 23.  until being transferred to Pittsburgh Children's Hospital.  During his first hospital stay  they ordered both a CT Scan and an MRI.  In addition to these tests they also looked for signs of MS and did an EMG which is an Electromyography. Electromyography (EMG) is a diagnostic procedure to assess the health of muscles and the nerve cells that control them (motor neurons. This is extremely uncomfortable for a child has as they are inserting needle electordes.  Let's not forget all these procedures are being done to a 1 month old child.  How stressful does that have to be watch your child go through all these procedures?? They also thought it could be Botulism as well.   Well after all these procedures and tests were done they got their answer.   On April 26 Mariah's  world as she knew it was about to come crashing down in an instant!!   Her sweet baby boy Koehyn was diagnosed with  SMA Type 1 which is short for Spinal Muscular Atrophy.  It's the worlds most deadliest genetic disease in infants and kills about 95% of them without treatment before 2 yrs old.   All this was happening to a mom who was all of 21 yrs old.  Can you even imagine how you would deal with this news at such a young age??   Life as you know it at that very moment is over!!   Mom is panicking having no idea what SMA  is and is  left with more questions then answers.   What is my baby boy's life going to consist of now??    What is SMA is it deadly??  What options are available to treat my son??  How long can he live with SMA?? What are  the next steps??    She soon came to find out that the SMA was indeed deadly if not treated.  It was going to eat away at his muscles slowly but surely and lead to atrophy over time.   Without treatment he would likely lose his ability to walk, talk, stand up, crawl keep his head up and eventually would lose his swallow and ability to eat most foods.  When a child is diagnosed with SMA time is of the very essence each day without treatment is a day closer to an almost certain death sentence.   The good news is their are two options for treatment at this time both are incredibly expensive.  The first is Spinraza which basically keeps the symptoms from getting any worse but it won't stop the disease in its tracks. SPINRAZA is administered intrathecally by, or under the direction of, healthcare professionals experienced in performing lumbar punctures. Initial SPINRAZA treatment is with 4 loading doses. The first 3 loading doses should be administered at 14-day intervals. After his first 4 loading does he will get it every 4 mos. for the rest of his life. The second treatment and the one that will give him a chance at returning to a much more normal life is called Zolgensma  and is for single-dose intravenous infusion only.  Other babies who've received this treatment have made incredible progress and are doing incredibly well today. You also might ask why can't her son  receive Zolgensma??  The good news is he absolutely can but there are 2 barriers to making that happen.  I forgot to tell you this miracle drug is the most expensive in the world to receive. One dose costs $2.5 million a hefty price tag that doesn't allow many families to receive this life saving miracle drug.  The second option to getting it is getting her insurance to pay for it which through prior experience is a herculean task.  We've done it before with other insurances but it can take months on end and is a brutal fight. It truly takes an army to get insurance to approve the drug and allow for dosing.  Mom has already been denied once in her appeal by Aetna Better Health of W VA which is Medicaid.  Their reason for denial was he has to be off a ventilator for 8 hrs.  Well if he could be off the ventilator for 8 hrs  there would have been no need for mom to have him trached which he was on June 3.  Additionally,  he has a feeding tube in his stomach.   Her neurologist wrote the appeal for her and told the insurance  he needed this treatment because his breathing was really bad and he had poor muscle tone as well.  The sad part is mom was never even notified of the denial for her baby Koehyn.   Its incredibly infuriating when every day without this treatment is another day of lost muscle use that may or may not come back. Yes we have time because he isn't close to his 2nd birthday  but we really don't have any time,  As I explained earlier the havoc this disease inflicts on our children.   The mother has been to hell and back in a short 4 mos and she deserves better!! This is where all you great people come in to hopefully donate and at the very least share with everyone you know.  Please let's show this amazing mom we have her back and care about her son.  No amount is to small and goes a long way towards helping. Thank you and god bless  everyone.  Whose ready to help save a child's life??