Evan Bell

First post: Oct 23, 2018 Latest post: Oct 13, 2020
In the early hours of Sunday, October 14th, while on vacation with his parents and grandparents in the south of France, Evan woke up very upset and with a high fever. His parents decided to take him to the hospital in Bordeaux an hour away. The astute emergency team there noticed irregularities with his blood work that went beyond just a simple fever, and worked with the hematology unit to look further into the issue. They very quickly diagnosed Evan as suffering from Macrophage Activation Syndrome (MAS), a subset of Hemophagocytic Lymphohistiocytosis (HLH).  We'll let this website explain it to you:


Evan suffered from an enlarged liver and spleen, which only got worse over the next few days. By Wednesday, the hospital team in Bordeaux were able to arrange for Evan to be transported by private jet to Necker Hospital in Paris, which happens to be a leading unit in treating this rare disorder. Quelle chance! 

Evan is currently under the "management" portion of his condition. This entails giving him drug and steroid therapy to regulate his condition by stopping his immune system from needlessly attacking his organs. This process should take about two weeks if all goes well, and Evan will feel comfortable and like a normal baby again after the first few days if all goes well. 

If the syndrome is managed, then he can begin the "treatment" portion of his condition. As the root cause of this problem is a genetic disorder, this will require a Bone Marrow Transplant. Without that, Evan's immune system will likely overreact each and every time he gets sick. The doctors at Necker Hospital are already working on searching for a match for Evan, and if they cannot find a perfect one, then either his mom or dad will act as the donor. 

We have received many questions about becoming a possible donor for Evan. That is fantastic, and we encourage anyone interested to go to the Be The Match website, which is the US based donor organization, and also has info on certain other international countries as well. It is highly highly unlikely that anyone we know will be the perfect 10 match that would be relevant for Evan's situation, and as noted above, anything less than a 10 match will lead to either me or Jill acting as the donor, which we are very eager and ready to do. But perhaps you'll be a perfect 10 match for someone else! 

We are so lucky to have had great care for Evan thus far, with excellent doctors and nurses attending to his needs. His Aunt Jenny flew into town to help out, his Grandma has extended her stay in town, and so many friends in Paris and from around the world have helped out as well. We are also learning lots of French vocabulary in the process!

Also, note that Caring Bridge requests donations to their website when you read our blog. We leave that to you, but note that we have already donated to the website the suggested amount for covering Evan's expected period of care, and we will continue to donate if that time extends.