The journey of a parent is often filled with dreams for their child’s future—hopes for their health, happiness, and success. But for one family, that journey has been marked by overwhelming grief, constant hospital visits, and a heartbreaking battle against an incredibly rare and terminal genetic disorder. Their precious daughter, Presley, is just two years old, but she has already faced more challenges than most people will in a lifetime.
Presley was diagnosed at just four months old with Pontocerebellar Hypoplasia type 6, RARS-2, a rare and progressive mitochondrial disorder that deteriorates over time. This terminal illness, which affects the brain and other vital organs, has taken a devastating toll on Presley’s body, leaving her dependent on life-sustaining machines and in need of constant care. Tragically, doctors have confirmed that there is no cure, and Presley’s prognosis is poor.
As a result, Presley has been battling a host of serious medical conditions, including intractable seizures, epilepsy, infantile spasms, acute respiratory failure, chronic lung disease, and severe neurocognitive and neuromuscular impairment. She is non-verbal, non-mobile, and suffers from blindness. Her days are spent surrounded by the machines and medications that keep her alive—oxygen concentrators, ventilators, feeding tubes, and a host of other devices that support her fragile body.
Despite the overwhelming nature of Presley’s condition, her parents have never stopped fighting for their daughter. They continue to provide her with round-the-clock care, offering their love and attention as she battles against the odds. But the toll on the family has been immense—emotionally, mentally, and financially. Presley’s condition requires constant hospitalizations, and she has been admitted 33 times in just two years, with stays ranging from five to 21 days. These hospitalizations are often followed by even more unanswered questions, as Presley’s condition continues to deteriorate and medical professionals struggle to provide solutions.
The family has already endured the emotional and financial strain of caring for Presley, and now they face even greater challenges. Both parents have had to leave their jobs to be with Presley during her extended hospital stays, and they have lost their employment due to the sheer number of medical appointments and hospitalizations. Additionally, many of Presley’s specialists are located out of town, making it difficult for the family to keep up with the necessary appointments while also managing their day-to-day lives. In response to these ongoing challenges, they are trying to relocate closer to Presley’s medical team to ensure that she continues to receive the care she desperately needs.
But the cost of relocation, medical care, and everyday expenses has become overwhelming. The family is turning to their community for support in this difficult time, asking for help to ensure that Presley remains comfortable, cared for, and loved. They have set up a GoFundMe page, and any contribution, no matter how small, will go a long way in supporting this brave little girl and her family. The funds will help cover medical costs, equipment, and the essential care Presley needs as she continues her fight against this cruel illness.
As if their journey isn’t difficult enough, Presley’s family has had to endure the heartache of watching their daughter suffer. Despite the incredible challenges, they remain hopeful and determined. “Our sweet girl never seems to catch a break, but we refuse to give up on her,” says Presley’s mother. “We want to continue giving our daughter the care she needs, and with your support, we can do just that.”
In addition to financial support, the family is asking for prayers. They believe in the power of faith and hope and are leaning on their community for strength and encouragement. Every prayer counts as they navigate this difficult journey with Presley by their side.
Presley’s story is one of strength, resilience, and a parent’s unyielding love for their child. Despite the constant medical challenges, Presley’s family continues to hold onto hope, fighting every day to give their daughter the best life possible. Their journey is a testament to the lengths parents will go to for their children, and to the power of a community coming together in times of need.
For more details on Presley’s journey and to offer support, please visit the GoFundMe page linked below. Your contributions will make a difference in Presley’s life, helping her fight this battle with the love, care, and comfort she deserves.
Thank you for your support, prayers, and generosity during this difficult time. Your help means the world to Presley and her family. May God bless them as they continue to navigate this heartbreaking journey. 🙏
