Heroes we are helping this year

Bára is a 27 year old girl who bravely fights with her destiny. She underwent surgery for a

malignant brain tumour at the age of 13 and subsequent very demanding treatment.

Unfortunately, she was left paralyzed on the right side of her body, suffering from double

vision, tinnitus and an abnormal accumulation of cerebrospinal fluid in the individual

ventricles of her brain. She experienced loss of motor skills and has a great difficulty walking.

She has been rehabilitating all the time, trying different clinics, day care centres and

physiotherapists.

Last fall, she was placed in an intensive rehabilitation program at the Axon Clinic, where she

goes three times a week for four hours at a time while working. Thanks to the intensity of

the exercises, the clinic's equipment and her strong will, she has made tremendous progress.

Bára says that life with a wheelchair is quite good, but she doesn't want to give up and

believes, together with her mother who is a great support, that she can become

independent again.

How will Advenťák runners help Bára?

Advenťák runners would like to pay for an intensive one-month rehabilitation programme

for Bára to help her make further progress on her journey to independence.

Elenka is a 16-year-old girl who has severe physical and mental disabilities. She has been struggling with this disability since she was 8 months old, when it manifested itself as a consequence of vaccinations. She is not able to move independently, cannot eat on her own, does not speak, and is therefore dependent on 24-hour care from her family.

In May 2014, Elenka was enrolled in a study of rare metabolic disorders. In November 2019, Elenka was diagnosed with a very rare genetic disorder - the candidate gene HNRNPU, which only 80 people worldwide have.

Elenka also suffers from a rare form of epilepsy for which medication does not work and sometimes there are very difficult times when Elenka has up to 250 epileptic seizures a day.

Elenka's father tragically died 14 years ago. And even though Elenka's mother was left to do everything on her own, she managed to raise a wonderful son who is now also helping her a lot with Elenka's care.

How will the Advenťák runners help Elenka?

The Advenťák runners would like to finance further intensive neurorehabilitation sessions for Elenka, which inscribes a special formula in her brain and despite her very poor diagnosis, Elenka is making progress, proving that with regular exercise you can make a miracle happen.

Sarah is a 12 year-old girl who broke the strongest bone in her body when she was five years old and has had more than twenty fractures since then. She is in her sixth year of cancer treatment. For the past two years, she has had severe chronic bones and joint pain and

cannot do anything that her peers do.

Her younger sister Elizabeth has cerebral palsy, spastic triparesis. She has had a number of surgeries and in April this year she was close to drowning, had to be resuscitated, which resulted in very aggressive moods, mood swings and demotivation.

Both girls cannot digest histamine well and therefore have to adhere to gluten free, dairy free and soy free diet.

The girls's father collapsed three years ago, suffered a stroke and had a second attack this year. Despite this, the family has not given up and providing regular rehabilitations to the girls and want to carry on doing them.

How will Advenťák runners help the sisters?

The Advenťák runners want to get the girls special mattresses and also pay for hippotherapy and physiotherapy so that their physical condition can improve.

Many Advenťák runners already know Jakub, because he is also one of us and even runs with us not only in December. And so we think that the best way to tell his story is that he introduces it to us himself:

I have had a lower limb disability since I was a kid - paraparesis. What is it caused by even doctors sometimes disagree, but the latest verdict was Friedreich's ataxia. But as one of my

favourite physiotherapists said "Jakub, but for what you suffer from, you are not that contorted". So the only thing the doctors in my life agree on is that "I will never be healthy".

Thanks to sports - rehab - and a large dose of compensatory exercises (stretching, yoga, foam-roller exercises, etc.) I manage to fight my disability and "slow down" the progression of the disease as much as possible.

A great impulse in my life to start working on myself again was the birth of my son. At that time, I weighed almost 100kg and I didn't go anywhere. Gradually I lost weight, I started to walk a lot, I even started to run - so that it never happens that when my little one wants to go to the playground and all I say to him is "sorry, but I won't get there".

Despite my initial fears - I was really scared to sign up for my first race, expecting people to react negatively, expecting them to laugh at me and think "what is he doing here, he doesn't even run" - I signed up for my first race.

But to my great surprise, the exact opposite happened, people were pointing at me but were respectfully tipping their hats. Over time I understood that if I moved, I could inspire someone else to get moving, to start doing "something" - which was confirmed over time when a few people wrote to me that when they saw me running they didn't hesitate to sign up for a race too, or at least start doing some sport.

And what do I enjoy about charity events? The fact that you don't have to have much yourself to make a difference in someone's life. The fact that offering a helping hand is sometimes far more than the "millions" in your bank account.

How will the Advenťák runners help Jakub?

We want to get Jakub running shoes for the whole year, as his running style wears the shoes far more than usual and we really want him to run with us and motivate others as well as he does now.

Matyáš was born as a healthy baby and almost until he was three years old, there was no indication that something would be out of the ordinary. When he started kindergarten, the differences between him and his peers began to manifest themselves. He wasn't as fast, he wasn't as good at jumping, running and climbing. His walking became wobbly.

After various tests, he was diagnosed with Duchenne muscular dystrophy in Motol hospital. It's a rare genetic incurable disease that affects boys who gradually lose all their muscles. Between the ages of 8 and 12, they stop walking. Matyáš is 13 years old, attending 7th grade of school. He can only walk a few steps with support. Otherwise, he uses a wheelchair. But he's a very optimistic boy. He is always smiling, he is kind and is popular with friends and adults as well.

His mother and grandmother take care of him and after his grandfather died - his male role model and great friend, Matyáš immediately took on the role of the only man in the family. It's almost funny how he tries - being a child and especially given his health issues - to take the place of his grandfather. He is a little hero who doesn't even realize how he makes life better and more beautiful for others.

How will the Advenťák runners help Matyáš?

The Advenťák runners want to get Matyáš an electric drive for his wheelchair that will take a lot of the strain off him so he can be more free and could go out with his friends.

Amélie was born in 2020 as the first of fraternal twins. When she was 3 months old, her mother Denisa noticed the first differences compared to her sister Terezka. Amélie had trouble holding her head up, wasn’t lifting her chest during tummy time, cried often, was restless, didn’t sleep well, and refused milk. At that time, however, doctors said everything was fine.

At 8 months old, muscle spasms began, prompting her mother to immediately start paying for private rehabilitation sessions. Months of Vojta therapy, however, showed no results. While her mother was covering all the costs herself, they finally received a referral to a neurologist, where they are still trying to determine the cause of all Amélie’s issues.

It wasn’t until she was 3 years old that Amélie took her first steps, and now, at 4, her walking is still not fully stable. She needs assistance with eating, cannot dress herself, and is not toilet trained. Her psychomotor development corresponds to that of a 2-year-old child. Amélie also suffers from dyskinetic cerebral palsy, muscle hypotonia, and axial hypotonia. Despite all the care Amélie requires, her mother also devotes time to Terezka, who loves playing with her sister and tries to help her whenever she can.

How will Advent runners help Amélie?

We will cover the costs of additional hippotherapy sessions,which are very important to Amálka and are moving her forward.

Justýnka was born a healthy baby, but after receiving the hexavalent vaccine, she began to change before her family’s eyes. She developed epilepsy, and her little body became limp like jelly. She started focusing only on light, and it was incredibly difficult for her family to watch her slowly fade away.

Justýnka has moderate intellectual disability, cerebral palsy, and central muscle hypotonia, which makes her body as floppy as a rag doll. Because of this, she constantly needs to strengthen her muscles.

Her mother takes her to spa treatments and pays for specialized neurorehabilitation programs, additional therapies, speech therapy, hippotherapy, and canistherapy. Life with such a severely ill child is extremely demanding, and it’s already taking a toll on her mother’s health—she had knee surgery in January and now faces at least six months of her own rehabilitation.

How will Advent runners help Justýnka?

We will arrange an intensive rehabilitation stay for Justýnka at the Klimkovice spa. After this stay, she is always more stable and attentive, benefiting both physically and mentally.

Kubíček was born a few days before Christmas, arriving a month early—perhaps eager to meet Ježíšek. In his first weeks, he cried constantly. As time went on, his parents noticed that he was not reacting much and was not making developmental progress. They visited several specialists, and Kuba was given glasses and started rehabilitation.

At one year old, their hard work paid off—until then, Kuba had only been a lying, murmuring baby, but for the first time, he rolled onto his tummy! However, the joy was accompanied by a difficult diagnosis: cerebral palsy. That summer, Kuba went to a spa for the first time and was thrilled to be in the pool.

After his second birthday, genetic testing revealed that Kuba has Angelman syndrome, a condition often called the “angel children” disease, which is associated with developmental delays and severe intellectual disability. His parents work with him daily, taking him to occupational therapy, speech therapy, and hippotherapy (which he doesn’t love, but it helps strengthen his core). He absolutely loves water—he could stay in a pool all day.

Kubíček is slowly improving in movement. Now, at five years old, he can walk around furniture and pull himself up to stand. However, his growing size puts strain on his legs—his ankles collapse, and his feet turn inward. He also has shortened Achilles tendons. While he wears orthotics from the Czech Republic, they are not sufficient to prevent further deterioration or, ideally, to help him improve.

Communication is also a challenge. Kubík does not speak, point, or express his needs, so his caregivers must anticipate everything for him. Despite these obstacles, he is a cheerful little angel. His younger sister has already surpassed him, running circles around him, and Kuba often tries to crawl after her.

How will Advent runners help Kubíček?

We will cover the cost of specialized Pohlig orthotics to help him get closer to independent walking—giving him more confidence, improving his stability, and preventing further foot deformities.

Natálka is a four-year-old girl who is considered a "non-mobile" child, with a mental development equivalent to that of a three-month-old baby. The reason for this is an undiagnosed cytomegalovirus infection during pregnancy. It wasn’t until she was four months old, after undergoing an MRI, that doctors discovered her brain development had stopped at the 20th week of pregnancy. Many parts of her brain are missing, causing severe disabilities.

Natálka has epilepsy, moderate hearing loss, and impaired vision. Her body is often affected by dystonia, which is linked to epilepsy and triggers painful seizures and crying episodes. Despite these challenges, Natálka is an incredibly happy and cheerful little girl. She loves lights, music, and her biggest joy is watching Peppa Pig. Her laughter fills the whole home.

A great blessing for Natálka is the opportunity to rehabilitate at the Sarema Center in Liberec, where dedicated physiotherapists work with her. Thanks to their care and special aids, Natálka was able to stand for the first time in her life! For her parents, it was an incredibly emotional moment—they never imagined that their little girl would ever stand on her own feet, even for a short while.

How will Advent runners help Natálka?

We will support her rehabilitation, enabling her to make further progress after the hip surgery.

Rostík will celebrate his 8th birthday in October. He was born with a rare condition – a vascular malformation of the brain. Right after birth, he had to undergo life-threatening surgery. Unfortunately, post-surgical complications followed, and his family gradually learned of additional diagnoses: epilepsy, an eye condition (astigmatism), central muscle hypotonia, and later, severe mental retardation (TMR). His first hospitalization lasted an incredible 5.5 months.

Rostík undergoes intensive daily therapy to learn how to control and use his body. Recently, however, he has been struggling with more frequent epileptic seizures, which have led to multiple hospitalizations. Despite these challenges, his parents strongly believe that the best "medicine" for Rostík is exercise. Thanks to regular therapy, he has already learned to lift himself into a tilted sitting position and, with assistance, can get on his knees or even stand. With support, he can even take a few steps! This is an incredible achievement, especially considering that at one year old, he couldn't even lift his head off the ground.

His parents dedicate all their energy and effort to his therapy so that he can continue to make progress.

How will the Advent runners help Rostík?

Rostík will be able to go to a monthly neurorehabilitation stay, which will always move him a few steps forward.

Tinka from Štramberk was born in 2015 with a condition called arthrogryposis multiplex congenita (arthrogryposis). She has affected ankles, hips, and shoulders. Treatment involves several surgeries. At three months old, she underwent tenotomy of her feet, and in the following years, she had surgery for right hip dislocation, McKay procedures on both feet, re-surgery on her right hip, tenectomy of her left foot, and surgery on her right foot. She took her first steps in March 2018.

In January 2025, Tinka is scheduled for another major surgery on her right hip and pelvis. After each surgery, her legs are in a cast for at least six weeks. At night, she wears splints, and every morning, she stretches her Achilles tendons to be able to walk. She practices Vojta therapy daily, strengthens her muscles, and attends rehabilitation sessions.

Due to her twisted shoulders, she has a different grip and cannot dress herself completely independently. She can walk short distances, but for longer distances, she uses a wheelchair. Despite all the challenges, Tinka is very popular among her peers, and her biggest support is her older sister Anetka and her parents.

How will Advent runners help Tinka?

The most important things for Tinka are the therapies, especially those at the spa, where Tinka is taught to walk and stretch her limbs properly. We will also help her by purchasing an electric drive for her wheelchair so that Tinka can go on longer walks with the whole family.