My Life with my Butterfly Girl

By Robin Hood

When Robin Hood's daughter Alexandra was born in 1989, a devastating diagnosis shattered the future he and his wife Virginia had imagined. Alexandra suffered from Epidermolysis Bullosa (EB), a rare genetic condition so severe that even the gentlest touch could tear her skin and leave her in agonising pain. Doctors warned that she might not survive childhood. Determined to prove them wrong and desperate to find a cure, Robin embarked on a lifelong crusade that would consume everything he possessed. Over the years he sacrificed financial security, family stability, personal relationships and ultimately much of himself in a relentless effort to raise awareness and funding for EB research. My Life with my Butterfly Girl is the extraordinary true story of a father's love, hope, unwavering determination and sacrifice. It follows Robin's journey from his working-class upbringing and entrepreneurial ambitions to becoming one of the most determined advocates for children living with one of the world's cruellest genetic disorders. At its heart, this is a story about family, resilience, grief and the enduring power of a promise made to a child.

• Format: Paperback
• Language: English
• ISBN: 1836158076
• ISBN13: 9781836158073
• Release Date: October 2026
• Publisher: Grosvenor House Publishing Limited
• Length: 220 Pages
• Weight: 0.69 lbs.
• Dimensions: 0.5" x 6.1" x 9.2"