{"id":18701,"date":"2025-05-15T17:55:46","date_gmt":"2025-05-15T21:55:46","guid":{"rendered":"https:\/\/thealfam.com\/evermore\/public\/?p=18701"},"modified":"2026-07-28T13:15:18","modified_gmt":"2026-07-28T17:15:18","slug":"supporting-grieving-families-through-rare-disease-loss-the-traces-of-trinity-foundations-mission-of-hope","status":"publish","type":"post","link":"https:\/\/thealfam.com\/evermore\/supporting-grieving-families-through-rare-disease-loss-the-traces-of-trinity-foundations-mission-of-hope\/","title":{"rendered":"Supporting Grieving Families Through Rare Disease Loss: The Traces of Trinity Foundation\u2019s Mission of Hope"},"content":{"rendered":"[vc_row type=”in_container” full_screen_row_position=”middle” column_margin=”default” column_direction=”default” column_direction_tablet=”default” column_direction_phone=”default” scene_position=”center” text_color=”dark” text_align=”left” row_border_radius=”none” row_border_radius_applies=”bg” row_position_desktop=”default” row_position_tablet=”inherit” row_position_phone=”inherit” overflow=”visible” overlay_strength=”0.3″ gradient_direction=”left_to_right” shape_divider_position=”bottom” bg_image_animation=”none”][vc_column column_padding=”no-extra-padding” column_padding_tablet=”inherit” column_padding_phone=”inherit” column_padding_position=”all” flex_gap_desktop=”10px” column_element_direction_desktop=”default” column_element_spacing=”default” desktop_text_alignment=”default” tablet_text_alignment=”default” phone_text_alignment=”default” background_color_opacity=”1″ background_hover_color_opacity=”1″ column_backdrop_filter=”none” column_shadow=”none” column_border_radius=”none” column_link_target=”_self” column_position=”default” gradient_direction=”left_to_right” overlay_strength=”0.3″ width=”1\/1″ tablet_width_inherit=”default” animation_type=”default” bg_image_animation=”none” border_type=”simple” column_border_width=”none” column_border_style=”solid”][vc_column_text]\n

Supporting Grieving Families Through Rare Disease Loss: The Traces of Trinity Foundation\u2019s Mission of Hope<\/strong><\/h1>\n

By Crystal Jennings<\/p>\n

In 2004, my husband Darrell and I began our life together as husband and wife,\u00a0excited for the journey ahead. Early on, we knew we wanted children\u2014children who would\u00a0be close in age and close as siblings and friends. And so, in January 2007, our first\u00a0daughter, Aaliyah, was born, and just under two years later, in December 2008, we\u00a0welcomed our second daughter, Lailah. Both girls were healthy, beautiful, and formed an\u00a0inseparable bond. For years, we enjoyed life as a family of four, watching our daughters\u00a0grow, laugh, and become best friends.<\/p>\n

The Light of Trinity: A Joyful Arrival<\/h3>\n

But about ten years later, something shifted. Almost out of nowhere, I began to feel a deep yearning to add another child to our family. At first, my husband Darrell had questions\u2014after all, we had two daughters who were growing older, and the idea of starting over with a new baby was daunting. Yet, after thoughtful discussions and shared excitement, we decided to\u00a0try for another child, and before long, we were expecting again. This time, our joy came in\u00a0the form of Trinity Anne Marie, born on July 21, 2019.<\/p>\n

\"\"From the very beginning, Trinity was a source of immense joy and light in our lives. She was healthy, happy, and oh so beautiful. Her bond with her older sisters, Aaliyah and Lailah, was nothing short of magical. Despite the age difference, the three of them were inseparable, and it was clear that Trinity adored her big sisters as much as they adored her. Trinity quickly became the spark that brought even more laughter, love, and connection into our family.<\/p>\n

A Spark Like No Other: Trinity\u2019s Spirit<\/h3>\n

As a child, Trinity was spunky, funny, and wise beyond her years. She was a little firecracker,\u00a0full of \"\" big feelings and even bigger smiles. She had a way of filling a room with her energy,\u00a0and you couldn\u2019t help but feel brighter just being around her. She loved to dance, laugh, and\u00a0play, and she had this beautiful ability to make every moment feel special. Her curiosity was\u00a0endless\u2014Trinity wanted to know how things worked, what people were feeling, and most of\u00a0all, how to bring joy to everyone around her. In her short time with us, she taught us so much\u00a0about living fully and loving deeply.<\/p>\n

Our life with Trinity was rich with precious memories and moments of pure happiness. We\u00a0will always cherish those early days\u2014her first steps, her giggles, her spontaneous hugs. But\u00a0the richness of Trinity\u2019s life was not measured in the length of her years, but in the depth of\u00a0her spirit and the love she shared with all of us.<\/p>\n

A Sudden Shift: The Day Everything Changed<\/h3>\n

On November 5, 2023, our world turned upside down. What began as an ordinary day\u00a0became the start of a journey we could never have imagined. Trinity suffered a mini-stroke,\u00a0and in an instant, our lives were changed forever. The doctors began a 12-day process of\u00a0running countless tests, trying to understand the cause of what had happened to our little\u00a0girl. Trinity, being the fighter that she was, started to improve during those 12 days, a sign\u00a0that we clung to as we prayed for answers.<\/p>\n

A Rare Diagnosis: Facing Balamuthia<\/h3>\n

Despite her brief recovery, the tests came back negative one after another, leaving us with\u00a0more questions than answers. It wasn\u2019t until one of the final tests was done that we received\u00a0the diagnosis: Balamuthia mandrillaris, a rare and often fatal brain-eating amoeba. In that\u00a0moment, our hearts sank.<\/p>\n

Balamuthia is an extremely rare disease, with just over 200 documented cases worldwide\u00a0since its discovery in 1986. The amoeba has a devastating 95 percent mortality rate, and tragically, most cases are only discovered during autopsy because it is so rare and often undetected until it is too late. Patients usually succumb to the disease within days or, at best, two weeks after symptoms appear.<\/p>\n

A Warrior\u2019s Grace: Trinity\u2019s Hospital Journey<\/h3>\n

But Trinity was not like most. She fought this battle with a strength that left us in awe. Trinity\u00a0fought for nearly two months, far exceeding the grim prognosis of days or weeks. She\u00a0battled this illness with a grace and courage that inspired everyone around her. At one point,\u00a0Trinity had improved so much that we were able to bring her home after 40 days in the\u00a0hospital. \"\"We had the gift of spending quality time with her at home, where she could be\u00a0surrounded by the love and warmth of her family, especially her sisters. But just four days after returning home, Trinity\u2019s condition took a sudden turn. We rushed her to the ER, where we learned that the pressure on her brain had increased. Despite every effort to save her, our precious Trinity passed away on December 31, 2023.<\/p>\n

Losing Trinity was, and still is, the hardest thing we have ever faced. We will likely never\u00a0understand why our family and our little girl were chosen for this journey, but we take comfort\u00a0in knowing that God was with us every step of the way. Trinity\u2019s fight against Balamuthia was\u00a0nothing short of miraculous. Nurses and doctors continually remarked that she was the ideal\u00a0patient\u2014a shining light even in the face of such a rare and aggressive illness. Her love\u00a0touched the hearts of so many people in the hospital, and even while she fought this\u00a0devastating disease, she gave love and hope to everyone who cared for her.<\/p>\n

Continuing Trinity\u2019s Light: A Mission of Hope<\/h3>\n

Although we are devastated by her loss, we are also profoundly grateful. We were blessed\u00a0with four years of pure joy, love, and laughter with Trinity. \"\"In those four years, she made a\u00a0mark on the world that will never be forgotten. Trinity was, and will always be, our unicorn\u2014a\u00a0beautiful, rare, and magical being who brought light wherever she went. Her impact\u00a0continues to be felt, not only in the hearts of her family but also in the lives of those she\u00a0touched during her time on Earth.<\/p>\n

In the wake of her passing, Darrell and I felt called to continue Trinity\u2019s legacy of love,\u00a0strength, and hope. On July 19, 2024, we launched The Traces of Trinity Foundation in her\u00a0honor. The foundation is our way of keeping Trinity\u2019s memory alive while helping other\u00a0families who face similar challenges. Our mission is simple but powerful: we are dedicated to\u00a0providing support and resources to families with children facing extended hospital stays,\u00a0especially those fighting rare diseases like Balamuthia. Through our foundation, we aim to\u00a0spread hope, raise awareness, and bring comfort to families who are walking their own\u00a0difficult journeys.<\/p>\n

Trinity\u2019s life may have been short, but it was filled with love, beauty, and purpose. She taught\u00a0us how to fight, how to love fiercely, and how to make every moment count. The foundation\u00a0we built in her honor is a testament to her strength and the lasting impact she has had on\u00a0our lives. Every family we help, every bit of awareness we raise, and every act of kindness we share is a reflection of the love that Trinity gave to so many around her.<\/p>\n

Our vision is to ensure that no family feels alone or overwhelmed during their journey. We want them to know that, just as Trinity touched our lives with hope and joy, they too can find comfort and strength. Trinity\u2019s legacy lives on through The Traces of Trinity Foundation, and we are committed to honoring her memory by supporting families and spreading her light.<\/p>\n

We love you, Trinity, and we thank you for making our lives so much better. Your life was short but unimaginably rich and your love will forever live on in the hearts of all who know\u00a0<\/i>you.\u00a0<\/i>\u2014Mom<\/p>\n

Crystal Jennings lives in West Sacramento, CA and works in the political reform division within the Secretary of State as a Staff Service Manager over Lobbying Registration and Reporting.<\/i><\/p>\n[\/vc_column_text][\/vc_column][\/vc_row][vc_row type=”full_width_content” full_screen_row_position=”middle” column_margin=”default” equal_height=”yes” content_placement=”middle” column_direction=”default” column_direction_tablet=”default” column_direction_phone=”default” bg_color=”#FAF8F6″ bg_image=”20962″ bg_image_type=”default” bg_position=”center center” background_image_loading=”default” bg_repeat=”no-repeat” scene_position=”center” top_padding=”5%” constrain_group_1=”yes” bottom_padding=”5%” left_padding_desktop=”10%” constrain_group_2=”yes” right_padding_desktop=”10%” text_color=”dark” text_align=”left” row_border_radius=”none” row_border_radius_applies=”bg” row_position_desktop=”default” row_position_tablet=”inherit” row_position_phone=”inherit” overflow=”visible” enable_gradient=”true” color_overlay=”#FAF8F6″ color_overlay_2=”#FAF8F6″ overlay_strength=”0.95″ gradient_direction=”left_to_right” shape_divider_position=”bottom” bg_image_animation=”none” gradient_type=”default” shape_type=””][vc_column column_padding=”no-extra-padding” column_padding_tablet=”inherit” column_padding_phone=”inherit” column_padding_position=”all” flex_gap_desktop=”10px” column_element_direction_desktop=”default” column_element_spacing=”default” desktop_text_alignment=”default” tablet_text_alignment=”center” phone_text_alignment=”center” background_color_opacity=”1″ background_hover_color_opacity=”1″ column_backdrop_filter=”none” column_shadow=”none” column_border_radius=”none” column_link_target=”_self” column_position=”default” gradient_direction=”left_to_right” overlay_strength=”0.3″ width=”2\/3″ tablet_width_inherit=”default” animation_type=”default” bg_image_animation=”none” border_type=”simple” column_border_width=”none” column_border_style=”solid”][nectar_gradient_text heading_tag=”h2″ color=”extra-color-gradient-1″ gradient_direction=”horizontal” text=”Get the Latest Updates”][vc_column_text css=”.vc_custom_1784681150948{margin-top: 15px !important;}” text_direction=”default”]\n

Keep up to date on the latest legislative actions, news, resources, and events advancing bereavement care in America.<\/h4>\n[\/vc_column_text][\/vc_column][vc_column column_padding=”no-extra-padding” column_padding_tablet=”inherit” column_padding_phone=”inherit” column_padding_position=”all” flex_gap_desktop=”10px” column_element_direction_desktop=”default” column_element_spacing=”default” desktop_text_alignment=”default” tablet_text_alignment=”center” phone_text_alignment=”center” background_color_opacity=”1″ background_hover_color_opacity=”1″ column_backdrop_filter=”none” column_shadow=”none” column_border_radius=”none” column_link_target=”_self” column_position=”default” gradient_direction=”left_to_right” overlay_strength=”0.3″ width=”1\/3″ tablet_width_inherit=”default” animation_type=”default” bg_image_animation=”none” border_type=”simple” column_border_width=”none” column_border_style=”solid”][vc_row_inner column_margin=”default” column_direction=”default” column_direction_tablet=”default” column_direction_phone=”default” text_align=”right” row_position=”default” row_position_tablet=”inherit” row_position_phone=”inherit” overflow=”visible” pointer_events=”all”][vc_column_inner column_padding=”no-extra-padding” column_padding_tablet=”inherit” column_padding_phone=”inherit” column_padding_position=”all” column_element_direction_desktop=”default” column_element_spacing=”default” desktop_text_alignment=”right” tablet_text_alignment=”default” phone_text_alignment=”default” background_color_opacity=”1″ background_hover_color_opacity=”1″ column_backdrop_filter=”none” column_shadow=”none” column_border_radius=”none” column_link_target=”_self” overflow=”visible” gradient_direction=”left_to_right” overlay_strength=”0.3″ width=”1\/1″ tablet_width_inherit=”default” animation_type=”default” bg_image_animation=”none” border_type=”simple” column_border_width=”none” column_border_style=”solid” column_padding_type=”default” content_layout=”default” gradient_type=”default”][nectar_cta btn_style=”arrow-animation” arrow_animation_alignment=”left” heading_tag=”span” link_type=”new_tab” button_color=”accent-color” button_color_hover=”#247CC1″ text_color=”#FFFFFF” text_color_hover=”#FFFFFF” button_border_thickness=”2px” alignment=”center” alignment_tablet=”default” alignment_phone=”default” display=”block” display_tablet=”inherit” display_phone=”inherit” link_text=”Sign Up Now” font_size_desktop=”1.1em” url=”https:\/\/thealfam.com\/evermore\/mailing-list\/” padding_top=”0.65em” padding_bottom=”0.65em” padding_left=”1.5em” padding_right=”1.5em”][\/vc_column_inner][\/vc_row_inner][\/vc_column][\/vc_row]\n","protected":false},"excerpt":{"rendered":"

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