Payton’s fight with Spinal Muscular Atrophy

On February 12th, 2020 at 8am we received a call from my obgyn, my preeclampsia was getting worse and Payton needed to come out that day.  Twelve hours later we were laying eyes on our perfect baby girl.   We became infatuated with her the moment we saw her, our family was complete and despite COVID starting to rear it’s ugly head, life was perfect. We felt like we won the lotto when we got to skip out on the NICU and bring our sweet baby home with us.

Fast forward two months, we started noticing that Payton wasn’t hitting her developmental milestones like she should be, at first we just assumed it was because she was premature, but the mom gut was strong, so we decided to schedule a doctors appointment.  Our first appointment was very long, the doctor seemed very-through, no diagnosis was made, we were instructed to get her evaluated by a neurologist ASAP.   

We went innocently into this appointment, assuming it was just precautionary, there was nothing wrong with our sweet baby girl, she was just a “lazy baby”.  That appointment crushed us, the Neurologist shared he felt very strongly Payton has a neuromuscular condition, he wanted to run some tests. 

As they weeks have progressed , we have learned that our daughter does in fact have a neuromuscular condition, she has Spinal Muscular Atrophy.  SMA is a rare genetic disease that robs people of their physical strength by affecting their motor nerve cells in the spinal cord. It’s takes away the persons ability to walk, eat and ultimately breathe. With the type Payton has, historically children have not lived past their 2nd birthday.

As you can imagine, this news has shaken us to our core. It’s so hard to be a parent and watch your child fight for their life, knowing that they are slowing dying on the inside.

But we have hope! While there is no cure for this deadly disease, the FDA has recently approved Zolgensma, a gene therapy. This option works to fix her smn1 gene (ultimately the broken one), this is a one time injection and while it will not cure her condition it WILL dramatically improve her quality and ultimately length of her life.  But it comes with a price of $2.1 Million, it is the MOST expensive drug on the market.

SMA moves quickly, every day Payton is losing valuable neurons that can never be replaced. Right now we are currently working with the insurance to get funding, hopefully this process will move quickly. Once approval is received our family will be required to stay in Gainesville for several weeks so the doctors at UF Health can watch her very closely. Even with successful treatment, Payton will have many obstacles in front of her, along with long term physical therapy, her neurologist will quickly become her best friend. 

As you can imagine, the medical bills have already started accumulating, paired with travel expenses to Gainesville and potential equipment costs, the true financial impact is unknown. While we fully understand that almost everyone we know has been financially impacted by COVID, we have found ourselves in a position where we are forced to reach out.  

If you feel lead to financially contribute to Payton’s journey we will forever be grateful.  But regardless we do ask for your prayers and hopethat you follow us along this journey as we give Payton all the love and support she needs as she fights for her life.


#prayersforpayton