Jillian L Arnold

Gebundenes Buch

Soaring Together

A Butterfly Family's Story of Discovery, Love, and Resilience

Illustrator: Mommsen, Snezhana

Beschreibung

Soaring Together: A Butterfly Family's Story of Discovery, Love, and Resilience follows Roman and Stella, two butterfly siblings eager to explore the world. When they emerge from their chrysalises, they find themselves unable to fly. Disheartened, their parents lovingly reassure them that their differences don't limit their ability to experience life's wonders. With their parents as their wings, Roman and Stella embark on a unique adventure, discovering the hidden beauty in nature's overlooked details. Along the way, they teach their parents to see the world through a new lens, embracing the unexpected and finding joy in every moment. Aimed to teach young readers the importance of resilience, acceptance, and inclusivity, this story celebrates the power of love and the joy of shared experiences, showing that differences can lead to beautiful new perspectives. This story is inspired by real-life siblings, Roman and Stella Arnold, who are battling a rare genetic condition. To learn more about their story please visit: SAVEROMANANDSTELLA.COM

Autor

Jillian is a podcast host, children's book author, rare disease advocate, and speaker. She is a wife and mother to two incredible children, Roman and Stella, who both live with an ultra-rare and life-limiting genetic disorder, ASMD (Acid Sphingomyelinase Deficiency, also known as Niemann-Pick Disease Type A/B). Driven by her family's journey, Jillian launched her podcast, Confessions of a Rare Disease Mama, in 2021 to support and uplift other families facing similar diagnoses.In November 2024, she published her first children's book, Soaring Together, which introduces young readers to disabilities and the power of inclusivity. Jillian also actively supports medical research, serving on the Research Participant Advisory Committee for her local children's hospital, and she's a member of both the Genomic Information Commons Patient Advisory Panel and the Family Support and Assistance Committee for the National Niemann-Pick Disease Foundation.A passionate storyteller, Jillian shares her family's journey on social media, inspiring and connecting with other parents navigating the challenges of raising rare diseases children. She understands the shock and heartbreak of a rare disease diagnosis and encourages families to find light, hope, and beauty beyond the initial darkness.

Produktdetails

• Verlag: Confessions of a Rare Disease Mama
• Seitenzahl: 40
• Altersempfehlung: 3 bis 8 Jahre
• Erscheinungstermin: 11. November 2024
• Englisch
• Abmessung: 203mm x 203mm x 6mm
• Gewicht: 295g
• ISBN-13: 9798991290401
• Artikelnr.: 72193016