In a heartrending narrative, Caleb and Carrie Fowler share their family’s journey navigating the challenges of a devastating diagnosis in 2020. Their daughter, Haidyn, was just five years old when she was diagnosed with Sanfilippo syndrome, a rare neurodegenerative disease. Carrie described it as akin to “childhood dementia or childhood Alzheimer’s,” words that resonate deeply with every parent who fears the unthinkable.
Haidyn’s decline has been steady and heartbreaking. Where once she could walk, run, and play on a trampoline, she has lost her mobility and her ability to speak. As Carrie explained, “There is no cure or treatment. It is 100 percent terminal.” Following the diagnosis, they received a cold reality check: to take Haidyn home and cherish the time they had left. This direction, while poignant, placed an immense strain on the family’s resources.
“We sold our home, moved into my in-law’s basement initially to build our own home, but turned into being able to survive financially,” Carrie stated. The financial burdens piled up as they faced “endless medical bills” and attempted to raise two daughters on a single income. With their savings dwindling, the situation grew dire. Carrie expressed this struggle on their GoFundMe page, stating, “We’ve run through our savings just trying to make it through.”
Recently, a beacon of hope emerged when a vacant log cabin near Caleb’s parents’ home came to their attention. The cabin, already equipped with a ramp, seemed preordained for Haidyn and her wheelchair. Carrie remarked on this unique opportunity, noting that the home “represents something we haven’t had in years: peace, privacy, and a place of our own.” However, acquiring it would require full funding, an uphill battle for the family.
They set their sights on raising funds through a GoFundMe appeal, aiming for $400,000. Carrie candidly wrote, “It feels impossible to even write that number and swallowing my pride to share this is one of the hardest things I’ve ever done.” The emotional weight of that request is palpable, made heavier by the reality of their situation and the stark realization of what the home represents—a sanctuary amidst chaos for both of their daughters.
To their surprise, the public response was generous and swift. Within days, the campaign raised over $157,000, a figure that left Carrie feeling overwhelmed. “That number is overwhelming,” she shared, emphasizing that it symbolizes “thousands of people who chose to say yes. Yes to our story, yes to Haidyn’s dignity.” The level of support reached out to them was a testament to the grace of community and humanity even in dire situations.
Yet, along with the generosity came unkind remarks. Carrie endured cruel questioning about their decision to ask for help, terms that cut deeply into her pride. “People who question why we would ask, or who say hurtful things about our family,” she commented. This response underscored the stigma surrounding families in need, especially when they openly seek assistance. But Carrie drew strength from the outpouring of kindness that countered the negativity. “The good outweighs the bad,” she reflected, a mantra in her journey of vulnerability.
The cabin isn’t just a house; it is envisioned as a final haven for Haidyn. Carrie’s poignant description captures the essence of their hope: “What we are asking for is a modest home, close to family and community, where Haidyn can live out the remainder of her life.” The ideal is for Haidyn to be enveloped in love and care during her final days, where they can grieve together, “in complete privacy.”
Amidst these struggles, the community’s kindness has redefined Carrie’s understanding of support and connection. She expressed her gratitude for the nearly 5,000 donors and well-wishers who rallied to help them. “Thank you for loving my family. One day, when we make it out of the trenches, we will pay it forward in every way we can. I promise,” she pledged. This promise resonates; it speaks volumes about resilience and love in the face of adversity.
The Fowler family’s fight is a tale of endurance, community, and the stark realities of life. It stands as a reminder that behind every donation there lies a story of struggle and hope, deserving understanding and compassion rather than judgment.
"*" indicates required fields
