Dylan Hayes

2017 will be a year my family and I will never forget.  We were thrilled to find out we would be expecting our second child in October, and after a pretty normal pregnancy we were blessed to welcome Dylan to our family on October 17, 2017.  After our experience with Logan, we were so happy to have an “easy” and pretty uneventful delivery with Dylan, and were excited and relieved to have a healthy baby boy.  We were adjusting well to being a family of four.  Logan adjusted much better than we thought he would, and I could not believe how much easier my recovery was this time around.  The only hard part was the weight restriction (due to having a c-section) and not being able to pick up and carry Logan.

When Dylan turned one month old, we ventured out on our first trip to Iowa for the Thanksgiving holiday.  I then started to notice Dylan seemed a little sleepier than normal, and by the Sunday and Monday before the holiday I noticed he wasn’t moving his arms and legs much.  I scheduled an appointment for him on Tuesday, and made the trip back to Madison to get him checked out.  We were transferred to the ER to run some more tests and after many doctors evaluated him, we were eventually admitted to the American Family Children’s Hospital with a tentative diagnosis of Guillain Barre Syndrome (GBS).

To treat this Dylan received a medication called IVIG and needed five doses over the course of five days, so we were in the hospital over the holiday.  We were told we would gradually notice some improvements, but it could take months for him to fully recover.  We were being discharged from the hospital on Monday, and that’s when we saw Dr. Meredith Schultz for the first time.  She asked what we knew about his condition and then asked “has anyone mentioned the possibility of this being SMA?”  This is when we first heard those three letters that would forever change our life.  She explained that he shows signs of having Spinal Muscular Atrophy (SMA) and she would like to get him tested as soon as possible.  She mentioned it can be a scary disorder, and advised us not to research it on our own – that they could provide information if we wanted.  She also mentioned some new treatments that have greatly affected the course of the disorder and if he did have SMA, he should get started on these as soon as possible.  We decided to wait until the results came back to learn anything else about the disorder – there was no sense in worrying about something until we had to.  We were discharged and sent home to a long week of waiting for the test results.

On Wednesday, December 6, 2017 we met with Dr. Schultz and learned that Dylan had SMA Type I.  SMA  is a relatively common "rare disorder" affecting approximately 1 in 11,000 babies, and about 1 in every 50 Americans is a genetic carrier.  There are four primary types of SMA—I, II, III, and IV—based on age of onset and highest physical milestone achieved.  Type I, the most severe and most common, is usually diagnosed within the first six months of a baby’s life.  Babies with SMA Type I face many physical challenges, including muscle weakness and trouble breathing, coughing, and swallowing.  However, SMA does not affect a person’s ability to think or learn.

We had two options to treat this, one was a clinical trial for a gene replacement therapy, and the other was a new drug called Spinraza which had been approved by the FDA just under a year prior.  These were the only two things available to treat (not cure) this disorder.  After a long discussion, we decided to hopefully get into the clinical trial and Dr. Schultz was going to follow up on some things.  The next day I got a call from her office wondering if I could stop by, and we then learned that since Dylan received the IVIG treatment in the hospital, he was not eligible for the clinical trial at this time.  We would have to wait until the IVIG had completely left his system which would take three months, and then she could start the screening process for the trial to see if he would be eligible.  If we didn’t want to wait, we could start him on Spinraza, which would again disqualify him for the trial.  When I asked for her recommendation, Dr. Schultz said she would start Spinraza because she didn’t want to wait the three months – she didn’t know if he had that long.  Rob and I decided that Spinraza was the way for us to go for now.  Dr. Schultz is hopeful that the gene replacement therapy will eventually become FDA approved, and Dylan may be able to get that treatment at some point.  As much as we wanted him to get the gene replacement therapy since it would be easier on Dylan (it’s a one time IV treatment), it did feel good to be doing something now and not waiting to get into the trial.

 With Spinraza, Dylan will get four loading doses (at weeks 1, 3, 5 and 9), and then once every four months indefinitely.  Dr. Schultz was able to get him his first dose the very next day, on December 8, 2017.

 We don’t really know what the future holds for Dylan.  We don’t know when or if he’ll be able to walk, crawl, or even sit on his own.  If he would have been born at a time before Spinraza, he never would have been able to do these things.  But Spinraza is a game changer.  We now have hope that he will do all of these things someday.  We are taking this diagnosis one day at a time and still trying to wrap our minds around it.   We have our good days and our bad, but seeing how happy this little boy is sure makes life pretty amazing!