Elli is a three-year-old girl who was born a healthy baby. But it soon became clear that her development was not following the typical path. After more than a year of searching for answers, Elli was diagnosed with a rare genetic condition – Arboleda-Tham syndrome – which affects both her mental and physical development. In September 2024, she was also diagnosed with CVI, a visual impairment that makes it difficult for her to process visual information.

Despite all the challenges, Elli is a joyful, perceptive little girl who loves to explore the world at her own pace. Communication is still difficult for her, and she often retreats into her own world, but every new look, smile, or response is a huge source of joy for her family. A major milestone came in autumn 2023, when she started crawling – her very first way to move around independently.

Elli regularly attends neurorehabilitation, speech therapy, occupational therapy, music therapy, hippotherapy, and other sensory therapies. She responds really well to them and makes significant progress, especially in her motor skills. In autumn 2023, she completed her first full four-week intensive rehabilitation program – which played a key role in helping her learn to crawl.

How Will Advent Runners Help Elli?

We aim to support further intensive rehabilitation for Elli. Right now, she is working hard on standing with support and taking her very first steps – with help from an adult or using a walker. And she’s making amazing progress. Let’s help her take the next step forward.