Adámek is 10 years old. He was born with a rare genetic disease: Merosin-deficient congenital muscular dystrophy. His mobility is very limited, he has severe contractures on his hands, his legs and hips already went through a surgery and thanks to developing scoliosis, he cannot sit without help. He needs constant care, 24/7. We would like to finance rehabilitation therapies and hipporehabilitations, which helps him relax his hands as well as his neck and back.

Nikolka is 15 years old. She was diagnosed with a genetic disease Angelman syndrome. At a first sight, she appears like a healthy young lady. However, she suffers from severe mental retardation, epilepsy, sight dysfunction and hypotonia. She needs constant medical treatment. With help of rehabilitations, she learned to sit and crawl, with support, she would even stand-up. No one know, if she will ever walk, though. Because of this, she now focuses on learning to handle a wheelchair without help. This is greatly helped by rehabilitations, which we would like to finance.

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.

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.

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.

This is Barborka.

Barborka is 11 years old. She was born at 38 weeks of pregnancy as a twin to her brother Daniel, after an uncomplicated pregnancy.

When she was two months old, Barborka had to undergo a complex surgery to correct a congenital heart defect that doctors discovered three days after birth.

During the surgery, she suffered bleeding in the brain, which caused motor difficulties.

Thanks to daily rehabilitation, Barborka can now move in small jumps and lift herself into a high kneeling position, but her body still doesn’t allow her to stand on her own.

She is a very lively girl, loves to play with her peers, and enjoys riding her tricycle, going on trips, and taking part in different activities.

However, she always needs a manual wheelchair and assistance from another person.

How can the Advent Runners help Barborka?

The rehabilitation sessions she attends twice a week for two hours at the “Krásná rehabilitace” center in Klimkovice are essential for her progress, as she’s still working hard to stand on her own feet and become at least partly independent.

Unfortunately, these sessions are not covered by insurance and are very expensive.

We would like to cover the cost of Barborka’s rehabilitation for the entire next year, so her family can take a breath and spend more time on other activities instead of constantly worrying about how to afford her therapy.

Jáchym turned 10 in June.

He was born with a newly developed genetic defect, so rare that only about 12 children in the world are known to have it — and it doesn’t even have a name yet.

This genetic abnormality (a deletion on the arm of chromosome 6) has caused severe mental and physical disabilities, leaving Jáchym completely dependent on others for all daily activities — he cannot speak or walk and needs 24-hour care, including constant diaper use.

Despite all of this, Jáchym is a very joyful boy who enjoys life to the fullest.

Caring for him is emotionally, physically, and financially demanding, but he gives so much back with his smiles, joy, and small but precious steps forward, which he works on together with his loved ones.

He regularly attends hippotherapy, spends a month every year at a neurorehabilitation program in Klimkovice Sanatorium, and enjoys time outdoors, thanks to a special wheelchair and an adaptive bike. His family supports him in developing both fine and gross motor skills.

Jáchym also has a 13-year-old sister, Ellen, who studies at a grammar school. She loves her brother deeply and helps their mom a lot with his care. Their father doesn’t live with them, as the parents are divorced.

At the moment, the family is facing a housing challenge.

They currently live in a small two-room flat on the second floor of an old building without an elevator. As Jáchym grows and gets heavier (and cannot walk on his own), it has become impossible to manage daily life there. His mother has therefore decided to buy a small ground-floor house from the 1930s on the outskirts of their town.

The house, however, needs a complete renovation and adaptation to suit Jáchym’s care needs — a project that will require a lot of money.

And money is exactly what they don’t have to spare — Jáchym’s mom works part-time (as full-time isn’t possible due to caregiving), she has two growing children, expensive medical equipment, rehabilitation co-payments, and, of course, the rising cost of living.

They truly have a lot on their plate.

When little Pavlík came into the world four years ago, his start in life was anything but easy. Complications during birth meant he had to spend his first days in intensive care. Since then, both his and his family’s lives have been filled with doctors, therapy sessions, and daily challenges.

Even as a baby, it was clear that Pavlík’s development wasn’t following the usual path. Although doctors initially reassured his parents that everything was fine, they felt deep down that something wasn’t right — and they sought help early. Over time, doctors diagnosed Pavlík with childhood autism, moderate intellectual disability, attention and behavioral disorders, as well as sensory processing and sleep disorders.

Despite all the challenges, Pavlík’s family has built their lives around helping him grow, learn, and find peace in the world around him. Their days are carefully planned to give him every possible opportunity to move forward — to be calmer, happier, and more connected.

Pavlík regularly takes part in occupational therapy, snoezelen therapy, hippotherapy, and other activities that help him progress. He also attends a special school, where he’s doing really well — but the tuition fees are a heavy financial burden for his family.

How Advenťák Runners Will Help?

Advenťák runners want to give Pavlík the best possible chance to continue learning and growing. They plan to cover a full year of tuition at the Merklín Special School — a place that means so much to Pavlík and his family.

With this support, Pavlík could spend more time at school — longer than his current four hours a day — giving him more opportunities to learn and interact with others.

Advenťák runners also hope to fund his hippotherapy sessions, which are an important part of his development and bring him great joy.

Viktorka is a cheerful seven-year-old girl who came into the world under difficult circumstances — she was born with oxygen deprivation, hypotonia, and a large diastasis. Despite this, she was discharged from the hospital as an apparently healthy newborn. Over time, however, her development began to lag behind. When she was two years old, she finally underwent neurological examinations and her first stay at a rehabilitation spa, where she learned how to walk.

Sadly, as time went on, Viktorka stopped speaking, playing, using her hands, and even eating on her own.

On October 27, 2023, her parents heard the diagnosis for the first time — Rett syndrome. It is a serious neurodevelopmental genetic disorder that causes regression in psychomotor development and comes with many additional complications.

Viktorka cannot eat or dress by herself, she wears diapers, and she struggles to walk — outdoors she always needs support or a stroller. She has severe problems with motor coordination and cannot use her hands, which means she cannot communicate in any way, not even through sign language or picture cards. Despite all these difficulties, her understanding of language and her social contact are gradually improving.

During her stay at the rehabilitation spa, Viktorka was introduced to a special communication program on a tablet that can be controlled with her eyes. She quickly understood how to use this assistive communication device, and her parents would very much like to get one for her. Unfortunately, this device is extremely expensive, and neither the health insurance company nor the local authority agreed to cover the cost.

How the Advenťák Runners Will Help?

The Advenťák runners would love to buy this special communication device for Viktorka, so that she can better communicate with the world around her and use it as support in her education at school.

Mia is a 2.5-year-old girl who has already experienced life in four different families and whose brain was damaged during birth due to oxygen deprivation.

This little fighter has severe psychomotor developmental delays and currently functions at the level of a child around nine months old. She receives her nutrition through a tube directly into her stomach via a special pump and often vomits because she has severe reflux. Mia wears glasses with a +6.5 prescription to help her see the world, which fascinates her.

Mia is a very curious little girl who, despite her significant challenges, has learned to sit and crawl, is learning the sounds of animals, and constantly practices her mouth and tongue so that one day she can taste real food prepared in her new family.

Since May, Mia has been living with her new foster mother, who cares for her and also for a 15-year-old girl with atypical autism. Her foster mother exercises with Mia and works to help her eventually walk and run like other children.

How the Advenťák Runners Will Help?

The Advenťák runners would like to buy Mia a special stroller that she needs to move around and also fund intensive neurorehabilitation, which is not covered by insurance but is absolutely essential for her development.

Tomášek was born eleven years ago, and right after birth, he wasn’t breathing. At first, none of the doctors knew what was wrong with him. It wasn’t until fourteen days later that one doctor thought he might have a very rare condition called Congenital Central Hypoventilation Syndrome (CCHS).

CCHS is a congenital disorder of the nervous system in which the brain cannot properly control breathing, especially during sleep. Most patients require mechanical ventilation to prevent suffocation and to be able to breathe.

Unfortunately, this diagnosis was confirmed very quickly in Tomášek’s case. At the beginning of his life, he was unable to breathe either during the night or during the day. Over time, this has improved, and if he isn’t sick or extremely tired, he can now breathe on his own during the day. However, he still needs mechanical ventilation at night.

In addition to CCHS, Tomášek also has severe intellectual disability and atypical autism as a result of a brain hemorrhage he suffered after birth.

How the Advenťák Runners Will Help?

Tomášek needs many aids for his daily life, and the Advenťák Runners would like to help him by purchasing a new suction machine, an oxygen concentrator, and paying for a year of hippotherapy and snoezelen sessions, which Tomášek loves and which help him relax and calm down.

When Filípek was still in his mommy’s belly, he was a completely healthy baby. Unfortunately, complications occurred during his birth, and he was born showing no signs of life. The doctors managed to revive him, but the consequences of his difficult start in life are something he — and his whole family — carry to this day.

Today, Filípek is a ten-year-old boy diagnosed with perinatal encephalopathy, cerebral palsy, and epilepsy. He cannot walk, sit, or crawl and has a moderate intellectual disability. He relies on a wheelchair and requires 24-hour care.

Filípek loves trains, the metro, and all kinds of travel and trips.

Until recently, his dad carried him everywhere in a baby carrier, but Filípek has now outgrown it.

To make it possible for him to continue going on trips with his family — or even just spend time in the garden of their home in the countryside — he needs a special stroller.

How the Advenťák Runners Will Help?

The Advenťák Runners would like to buy Filípek a special stroller JOSI Wismi G2, so he can keep going on trips with his family and enjoy time outside in the garden.