As I type, I am sitting next to Brooklyn in an emergency room bed at Lurie Children’s, waiting. She has been sick for weeks and we don’t know what is going on. Lab results are looking like mono. Today, we will most likely go home. As she sleeps though, she wakes with nightmares, crying out and screaming. This isn’t from mono, this is Sanfilippo shorting out her brain. Her terrors are a vivid reminder that we don’t know how much longer we have before she starts regressing.
I hate to be dramatic, or try to get a sympathy vote, but this is just our life. I know you all have pain and all have causes that occupy your passions, time, and heart. We are so grateful for all the support we had from Build with the Boyces and are a bit gun-shy to ask again for support. This is our mountain, and I know many of you are climbing your own. But we know we can’t, and don’t want to, climb it alone, so we are reaching out for hands.
I know Saturday, April 26 is right around the corner, but we were wondering if you were available to come pray with us? We are open to fundraising suggestions as well and will outline some opportunities. Maybe you all could come by 10-11AM and we could pray and talk about next steps. Please private message me if you can attend.
If you want to donate closer to home, our dear friends, the Huberts, are also fundraising for clinical trials. Donate at LivLife
Stefanie and Justin