Celebrating new joys

Good morning! Are we gonna have a good day? Yeah. Yeah! 

My name is Amber. I've been married to my husband, John, for just over five years. We've been together a little over eight. And we have two amazing kiddos. So we have our son, Michael, who is four years old, and then we have our sweet baby girl, Payton. She is two. Payton has Type 1 SMA. 

When we first started this journey we were unsure and the unknown scared us. But now, thanks to Evrysdi, it excites us. We're excited to see what the next chapter of Payton's life looks like. I don't know that there's a day that goes by that I don't feel so much pride in everything that she does, knowing that she has been through so many obstacles, she has overcome so many challenges, and she shows up every day. 

The past two years have been scary, overwhelming, heartbreaking, exciting, joyful. They have been the hardest two years for our family, but they have been the most amazing two years for our family. When we first received Payton's diagnosis, I dove right in. I wanted to learn everything about SMA. I wanted to learn what treatment options were available, how I could get her the best possible care. That meant looking at treatments, it meant looking at medical equipment, it meant having conversations and really becoming an expert in SMA. I am constantly researching, constantly trying to learn more, and I came across Evrysdi. When considering Evrysdi I spoke with Payton's medical team, and we really discussed first and foremost if this treatment was right for her. And then we discussed the safety as well as any potential side effects. After we spoke with them and we were able to evaluate the side effects and the potential positive impact it would have in her daily life, we decided to move forward with Evrysdi. I think that our family's been so fortunate. We're fortunate that she's here today, and that's an amazing milestone that so many have not gotten and we're so thankful for that. 

I love watching Payton, the intent behind her action. She's so curious. She doesn't know what limitations she has, so she just tries to beat them every day. I think for Payton, her curiosity drives her. And I think that's part of why she's so strong today, because she doesn't know how to measure a limitation. She just knows to keep trying. And if it doesn't work the first time, maybe we'll try a different way. And I think that her curiosity has really been her building block. It's allowed her to develop new skills and to learn new things. Payton loves spending time with her cousins and her friends. She loves swinging in her swing. She loves doing puzzles. It's no secret, Payton loves all things water. I remember from the very beginning, those bath times, you could just see her face kind of light up. She'd get so excited, and playing on the swing set with her brother, hearing them giggle together, that's the stuff that melts my heart. 

Payton has this contagious spirit about her. I think I've watched so many people meet her and they can't help but smile and just love her. She is just a breath of fresh air. Anytime a parent thinks about goals, I think it always is that you want them to be the best possible version of themself. When we first started the journey of SMA, we didn't know what Payton's future held, but we knew that we didn't want those three letters to define her. We didn't want her to be SMA. We wanted her to be Payton. So in all of our daily activities and all of the things we do as a family, we make sure that that is not our core focus. We hope that through those efforts, we're instilling that same mantra in her, and that she'll continue to not allow SMA to be the focus of who she is, but really come into her own and be the kindhearted, curious, adventurous little girl that we know she is. 

The most important part of Payton's daily routine is that Evrysdi. So every morning she wakes up, she gets breakfast, and then we give her Evrysdi by mouth and we're ready to start the day. Evrysdi fits into our family's routine so nicely. I'm able to give it first thing in the morning and then we're on the go for the rest of the day. 

Our family is constantly traveling, so having a medication that we could take with us was very important. Making sure that it could be on the go just like our family. So, we oftentimes have our Evrysdi cooler bag packed and we're ready to go. 

For those that are out there still looking for treatment, I would just encourage you to do your research, to know the options that are out there, but most importantly to get early treatment. Speak with your doctor, take their guidance, allow them to help you, because your child's future is bright. 

I think every parent goes into parenthood with all these milestones that your children are gonna achieve. And we learned early on that those milestones would be hard for Payton. But she is persistent, and she is a very determined little girl. So every day she shows up. She is the happiest little girl. She always has a smile on her face. 

At the end of the day, Payton is just a little girl who wants to play with her toys. She's not a disease, she's not three letters, she's just a two-year-old girl who loves princesses. 

So pretty! 

This is Evrysdi in action.