Before we dive into Ellie’s story, we want to share some exciting news: Ellie has been invited to attend the Alström Clinic in the USA in March 2025. This specialised clinic offers the best expertise available for Alström Syndrome. We are asking for your support to help cover travel expenses so Ellie can be seen by world-class specialists. This visit will also help Ellie’s parents gain a deeper understanding of her condition and equip them with the tools to care for her before this relentless disease takes its toll.

Thank you for taking a moment to learn about Ellie. She is a brave 3-year-old fighting an ultra-rare genetic disorder that affects every aspect of her young life. Sadly, Alström Syndrome is a fatal disease for most children, who pass away in early childhood. Ellie faces new challenges each day and constantly defies the medical odds stacked against her. On behalf of Ellie’s parents, we are reaching out to ask for any donation you’re able to give—or, if possible, please share this post with your family, friends, and on social media.

Ellie’s resilience is nothing short of extraordinary. She is legally blind due to cone-rod dystrophy, experiences continuous eye movement (nystagmus) and severe light sensitivity (photophobia), and has hypothyroidism, severe obstructive sleep apnea, tachycardia, non-alcoholic fatty liver disease (NAFLD), obesity, and autism spectrum disorder (ASD). Her daily struggles are something no child should have to endure.

Alström Syndrome is one of the most brutal diseases, affecting nearly every organ in the body, and there is currently no cure. Many doctors have never even heard of it, which makes the Alström Clinic a rare and invaluable resource. This clinic is the best place for an Alström child to receive specialised advice and treatment plans to help make life a little easier for Ellie and her family.

While Ellie’s family knows their time with her is limited, they are determined to extend it as much as possible and make her life as comfortable as they can.

Any amount you can contribute is humbly appreciated.

The team at Border Towing.