Help support Baby Winnie & Family !

This GoFundMe account is to help Windsor’s family with the funds needed for her treatment and provide some financial relief so they can enjoy the moments. Times are tough for everyone, but if you are able to spare some extra funds, please do so. If anything, please feel free to share this story!

From Abbey Scarbrough:

You never really think it will be you.

Monday morning, we had a follow up with Windsor’s neurologist. Winnie has been making great progress since coming home from the hospital, so I was fully anticipating a good report. I certainly did not expect her to be diagnosed with a disease I have never heard of- Pompe. She needed to see a geneticist and cardiology within the week. The sense of urgency wasn’t comforting, but the whole time the neurologist was delivering this information, I was holding Windsor, and she was smiling at me. I believe she was telling me “it’s ok, Mama, I’ve got this!”

Windsor has mild cardiac involvement, however, the heart itself is functioning perfectly, so that was great news. As soon as her final labs come back, she will start having enzyme replacement therapy through infusions every 1-2 weeks, for the rest of her life (or until there is a cure )

I’ve already connected with some other Pompe mamas who have been a great comfort to me. Their children are thriving on ERT, and there is a doctor at Duke who is working towards gene replacement, which would ideally be curative.

Monday morning at 2:30am, Windsor woke Justin and me up chatting up a storm in her bed. This is out of character for her, but she hasn’t stopped talking since. She’s growing stronger and changing every day, so I am hopeful that she is making a little enzyme on her own, and the ERT will only make her that much stronger.

I have been angry. I have been full of sadness. I’m scared. It doesn’t feel fair. I don’t know why God would choose this path for my baby. His plan is greater than mine, and He loves Windsor more than I ever could, so I am trusting in this. It’s been a dark and heavy week, but I know there will be a rainbow at the end of the storm.

Justin, Lexington, and I are all awaiting results to see if we also have Pompe.

Please keep Winnie in your prayers, especially these next few weeks as she begins treatment. Please pray for Dr. Kishnani and her team at Duke University. Pray for a cure. Pray for Lexington as she navigates the changes that will ultimately result from this.

I don’t recommend you Google Pompe, as most data on there is outdated. If you want more information, visit pompeandyou.com

#nottodaypompe #littlesisterwinnie