Some stories touch our hearts so deeply that they leave a lasting imprint. This is one of them.
In Arkansas, a father shared a deeply moving image of his 6-year-old son, Jackson, saying his final goodnight to his 4-year-old sister, Adalynn—affectionately called “Addy.” The photo captured the bittersweet love between siblings as Jackson leaned close to say goodbye.
Addy was battling Diffuse Intrinsic Pontine Glioma (DIPG), a rare and aggressive brain tumor that had turned the Sooter family’s world upside down. Diagnosed in November 2016, Addy’s journey was marked by courage, laughter, and a fierce determination to enjoy life despite her illness.
Her father, Matt Sooter, shared the family’s heartbreak with the world. “No child should have to say goodbye to their best friend, their partner in play, their little sister,” he wrote. The photo struck a chord, reaching thousands who offered their support and condolences.
In her final days, Addy’s health rapidly declined. Despite her struggle to eat or swallow, her vibrant personality still shone through in fleeting moments. Matt shared updates on Facebook, detailing her condition and asking for prayers—not just for Addy but for Jackson, who stayed by her side through it all.
On that unforgettable night, Jackson whispered his love to Addy one last time. Shortly after, Addy passed away peacefully, surrounded by the family who cherished her.
The Sooters later shared a poignant message on their Facebook page, Hope for Addy Joy – Fighting DIPG: “Our sweet girl left us peacefully, calm, and free from pain. She showed the same determination in her final moments as she did in life.”
In a testament to Addy’s generous spirit, her family donated her tumors to medical research. They hope that by contributing to science, they can help other families avoid the heartbreak they endured. “Addy loved giving gifts and helping people,” they said. “This is her final gift.”
The story of Addy and Jackson reminds us of the incredible strength of love and family, even in the darkest times. Addy’s legacy continues to inspire, shining a light on the need for greater awareness and research for DIPG.
Rest in peace, sweet Addy. Your story has touched countless hearts.
What can we do?
The Sooters’ story is a reminder of how fragile life can be and the importance of raising awareness for rare diseases like DIPG. Share Addy’s story and help spread the word—because every voice makes a difference.
