Family of Edwin Santiago

It is with a heavy heart I share that on January 26th 2024, Edwin Santiago was diagnosed with bvFTD. Also known as, Behavioral Variant Frontotemporal Dementia. While his family and medical team knew he had subtle changes, his recent health decline came as a surprise to everyone, including his doctors.

Unfortunately, FTD can take years to diagnose and often goes misdiagnosed until it becomes abundantly clear. FTD is a cruel disease and the most common form of dementia for individuals under 60. For Edwin specifically, he did not test positive for any of the genetic markers of this disease and thus his medical team now feels his numerous concussions throughout his life contributed to his development of FTD.

Within the past few weeks of Edwin’s health decline, the Santiago family has faced unfathomable challenges as they’ve witnessed this disease take over the husband, father and grandfather they all know and love. Given Edwin’s current state, his medical team has determined it is no longer safe or in Edwin’s best interest to live at home. To provide him with the dignified care he deserves, the Santiago family has had to search for a memory care facility to place him and ensure he has 24/7 medical support during this last stage of the disease.

The Santiago family would like to extend a sincere thanks and appreciation for all the kind words and love that has been sent their way thus far. They feel your prayers immensely and know it is God and God alone that has carried them through one of the most challenging moments of their lives.

Many of you have reached out asking how to help. For this reason, this Go Fund Me account has been set up to help offset Edwin’s medical expenses. If you feel called or are able, please consider making a donation. While they have many tough decisions and challenges ahead, we can help make a small difference in alleviating the financial burden of providing Edwin with the care he needs.

Lastly, and just as importantly the family invites you to share below how Edwin made an impact on your life. The family would love to hear what Edwin meant to you or a time he made a difference in your life. We all know that he is an incredible husband, father and grandfather but he was also a mentor, advisor, coach, and ordained Catholic Deacon that touched the lives of many.

Let’s lift up his legacy, the positive impact he made on so many of us and wrap the family in our prayers as they work to process the challenges and changes ahead.