They Noticed Their Baby Was Stiffer Than Most Newborns. Months Later, She Was Given 10 Years to Live (Exclusive)

Parents left devastated after receiving a rare and life-changing diagnosis for their newborn daughter (Exclusive)

Gerard and Kaitlin Norton were overjoyed with the arrival of their daughter Madeline, but their world was turned upside down when they received heart-wrenching news about her health. At just 6 months old, Madeline was diagnosed with PKAN, a rare neurodegenerative disorder that would drastically affect her life expectancy.

The couple shared with PEOPLE their emotional journey since learning about their daughter’s condition and how they have been coping with the devastating diagnosis. Gerard and Kaitlin were in disbelief when they were informed that Madeline had only 10 years to live due to the disorder. The shock and despair they felt were unimaginable, but they knew they had to take action.

Despite the initial turmoil, Gerard and Kaitlin decided to start a GoFundMe campaign to raise funds for clinical gene therapy trials that could potentially help their daughter. The response from their community was overwhelming, with donations pouring in and exceeding $30,000 in just under two weeks. Kaitlin expressed her gratitude, stating, “The community around us has been amazing.”

The Nortons had noticed some unusual stiffness in Madeline’s movements, prompting them to seek medical advice. Little did they know that this seemingly minor concern would lead to such a life-altering diagnosis. The news of Madeline’s condition left the couple reeling, but they found solace in taking proactive steps towards finding a potential cure.

As they grappled with the reality of Madeline’s prognosis, the Nortons discovered the Loving Loic Foundation, a non-profit organisation dedicated to funding research for rare disorders like PKAN. Inspired by this initiative, they wasted no time in launching their own fundraising efforts to support the cause. The couple’s determination and resilience in the face of adversity have been truly remarkable.

In a bid to raise awareness and garner support, Kaitlin turned to social media platforms like TikTok and Instagram to share Madeline’s story. The response was heartwarming, with an outpouring of love and support from strangers around the world. Gerard reflected on the overwhelming support they have received, saying, “Every single person just wants to help and everybody wants to get her voice heard.”

Despite the challenges that lie ahead, the Nortons remain hopeful and determined to fight for Madeline’s future. They are united in their mission to find a cure for PKAN and are grateful for the unwavering support they have received. As they navigate this difficult journey, their strength and resilience serve as an inspiration to all who encounter their story.

In times of adversity, the power of community and love shines through, offering hope and solace to those in need. The Norton family’s unwavering commitment to their daughter’s well-being is a testament to the strength of the human spirit in the face of adversity. May their story serve as a beacon of hope for others facing similar challenges.