Standing Strong with James

A message from Brian & Madeline Burke:

Last August, our sweet James was admitted to the hospital after some unusual bloodwork. After a year of countless tests and appointments, we finally have answers. James has been diagnosed with a rare genetic blood disorder called Wiskott-Aldrich Syndrome. Wiskott-Aldrich Syndrome (WAS) is a genetically inherited immunodeficiency disease that occurs almost exclusively in males.

The only cure is rigorous and intense treatment which will include chemotherapy and a bone marrow transplant. This will mean ~6 weeks living in the hospital and many more months at home in strict isolation while James’ immune system recovers. It’s overwhelming to think about, but we are incredibly grateful that James’ sister, Saylor, is a donor match — a huge blessing in the midst of this scary journey. Saylor may not know this now as a two-year-old, but she is the savior James never knew he needed.

Despite the challenges ahead, we are hopeful and full of faith that James will come through this and go on to live a long, happy life. Right now, we’re cherishing family time, filling our summer with joy, love, and as much normalcy as we can before we start treatment later this Fall.

Your support — through donations, sharing this page, or simply keeping James in your thoughts — means the world to us. Thank you for being part of our village and walking alongside us as we help our kind, funny, and brave little boy through this fight. ❤️‍

From Madeline & Brian’s Family:

For those of you who know Brian and Madeline, we all know they are the most genuine, honest, loving, caring, generous, thoughtful, and best people you could ever surround yourself with. For those of you who are lucky enough to have met James and Saylor, you know where we come from when we say it would be tough to match their enthusiasm, might, optimism, curiosity, ingenuity, and kindness. This is going to be an extremely challenging journey for every one of them. Their goal is to make this journey feel as normal as possible for their little ones the next 9 months, and while we are hopeful there are no obstacles along the way, I can’t think of better parents to come out of this stronger and more cohesive with their children than Brian and Madeline. We will share updates along the way, but please keep James, Saylor, and their amazing parents in your prayers.

- The Burke’s & Patinella’s

Any funds in excess of medical expenses will go to the Wiskott-Aldrich Foundation. We encourage everyone to visit their website to understand what multiple families across the globe are going through.

https://www.wiskott.org/Home