Charity runs that help heroes, to whom their life was not as kind as to most of us

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.

Amálka is an eight-year-old girl who was born in the 26th week of pregnancy, weighing only 800 grams. She survived three severe infections, one of which caused brain damage. She has cerebral palsy, hydrocephalus, a shunt (to drain cerebrospinal fluid), and central quadriparesis. She relies entirely on a wheelchair for mobility.

As a high-risk newborn, she underwent eye surgery due to blood vessels pressing on her retinas, which threatened her vision. Although the laser surgery cost her peripheral vision, she can see and wears glasses. She has already undergone several surgeries related to the shunt — the most recent one was this April.

Recently, she has also been dealing with early-onset puberty and shortened Achilles tendons, and another surgery is being planned.

Despite everything, Amálka is a true fighter. Her family invests everything they can into regular rehabilitation sessions, which are essential for maintaining her condition and improving her quality of life.

How Will the Advent Runners Help Amálka?

We’ll help cover the cost of her rehabilitation so her condition doesn't worsen.

Nicolas was born in November 2018. At just seven months old, doctors diagnosed him with a brain tumor that affected the area of the optic nerves. After the first surgery, during which the tumor was partially removed, Nicolas unfortunately lost his vision. The hormonal part of the brain was also impacted, so he now requires multiple daily doses of medication – for hormones, epilepsy, growth, and blood thinning.

Over the years, he has undergone several more complex surgeries, including the insertion of a port and a system to drain cerebrospinal fluid. At the end of 2022, the tumor began to grow again, leading to a new round of treatment that lasted until June 2024. Sadly, the most recent MRI once again showed tumor progression.

Due to his health condition and blindness, Nicolas experiences developmental delays. To support his progress, he regularly attends physiotherapy, occupational therapy, and hippotherapy. Several times a year, he also participates in intensive rehabilitation programs at specialized clinics – both in Prague and Slovakia.

How Will the Advent Runners Help Nicolas?

We’ll help cover the cost of a 14-day stay in Piešťany. These stays are essential for Nicolas – they offer a comprehensive therapy approach, and after each one, he shows remarkable improvement. Not just in physical movement, but also in speech and overall development.

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.