Alyssa’s Journey

In August 2016, Betty’s life changed with the discovery of her pregnancy with Alyssa, lovingly nicknamed her ‘mustard seed.’ Despite medical concerns and a high-risk pregnancy, Betty found inspiration in the idea of faith as a mustard seed. Alyssa’s premature birth led to a diagnosis of the rare Russell-Silver syndrome, characterized by growth challenges.

Amidst the difficulties, Betty found solace and support in the Little Light House (LLH) community, a source of hope and joy. Grateful for readers and supporters who enable Alyssa’s education and therapy, Betty emphasizes the vital role they play in fostering strength and belonging among families like hers.

In August 2016, my life took a transformative turn when I discovered that I was pregnant with my precious child, Alyssa, whom I fondly referred to as my “mustard seed.” The significance of this name became even more profound as I navigated through a series of challenges.

In September, I received unsettling news after my first ultrasound, indicating potential complications that warranted a visit to a high-risk specialist. The words spoken at that appointment were heart-wrenching: “Don’t set your expectations too high; there’s a possibility she might be stillborn.” The weight of those words left me in tears, overwhelmed by worry and sadness. In that moment, I recalled the biblical verse from Matthew 17:20, which speaks of the power of even the tiniest faith, likened to a mustard seed. Drawing strength from this verse, I resolved to change the trajectory of my outlook and beliefs for Alyssa’s well-being.

From that point on, I attended appointments twice a week, determined to ensure the best possible outcome for my mustard seed. Eventually, on February 22, 2017, Alyssa was born at 37 weeks and four days, considered full-term. However, her small size at birth—weighing only 3lbs 10oz and measuring 15 1/2 inches—prompted a 21-day stay in the Neonatal Intensive Care Unit (NICU). Despite continued efforts and numerous appointments, Alyssa struggled to gain weight, leading to a recommendation for genetic testing.

Just before her first birthday, we received the diagnosis that Alyssa had Russell-Silver syndrome (RSS), an uncommon condition stemming from inadequate prenatal growth. Alyssa’s uniqueness was underscored as she became one in a hundred thousand, our very own lottery ticket. While my deepest desire was for her to experience a “normal” life, I came to embrace her rarity as a significant and powerful force, like a tiny mustard seed moving mountains within me.

A pivotal encounter with another mother introduced me to the Little Light House (LLH), a beacon of hope and community. This newfound friend, driven by her compassion, guided me to LLH, a place where I instantly felt a sense of belonging. Amidst the challenges of Alyssa’s Type 1 Diabetes diagnosis, the warm and supportive environment of LLH provided solace and camaraderie. This remarkable institution stands as a sanctuary of hope and joy, a haven where families like mine find strength.

The unwavering support we’ve encountered over the past few years—from dedicated teachers and staff to fellow parents—defies expression. LLH embodies a source of hope, a haven I’m reluctant to leave. In this haven, I’ve discovered a village, a tight-knit and extraordinary community that rallies behind us during times of adversity.

You, the reader, play an integral role in this village. Your act of reading this letter composed by a grateful mother like me holds immense significance. Your generosity has enabled us to access education and therapy that would otherwise be beyond our means. Your contributions infuse our world with hope, making it a brighter place.

Our successes and growth as a Little Light House family are a testament to the support we receive. You breathe life into our hopes, enabling us to face challenges with renewed vigor. For all of this and more, my gratitude is boundless. Thank you for being a part of the community that propels students like Alyssa toward a brighter future. Your impact resonates deeply, filling our lives with hope and possibility.

– Written by mother of Alyssa, Betty

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