My Story
Ahoj,
my name is Toník and I recently turned six.
I would like to tell you my story, but I’ll have to ask my mother to help me, because sometimes I still mix up my words and my mom knows exactly what I would like to say.
I was born on a beautiful autumn day when the sun was shining. I hadn’t really planned to arrive this early, but my mother was diagnosed with pre-eclampsia, and because it could have put her life and mine in danger, I had to be born. The first few minutes here were good, I screamed at everyone, as expected of a new-born. But then my breathing got worse. Once the doctors noticed, they rushed me to a special ward where they put an oxygen mask on me, which made me feel a lot better. However, they also had to put me to sleep to keep me calm. I don’t know why this happened to me, but I got a nasty infection from something, plus I turned all yellow until they had to shine a blue light on me. Let me tell you, right from the start I got a nice cocktail of diseases, plus they kept injecting me with some medicine and I didn’t like it at all. I was lying in the hospital and my mom and dad were very worried about me because they didn’t understand what had happened and what fate awaited me.
When I was two weeks old, doctors discovered that I had a very rare hearing disorder called auditory neuropathy. My ears are beautifully grown and developed, but they send sound through these very complex cables – the auditory nerves – and somewhere along the line that’s where things broke down. So my hearing is like listening to a very out of tune radio. Human speech is extremely complicated for me, and if it weren’t for the invention of the cochlear implant, I might have never started talking.
As I grew older, my parents’ concern for my health grew as well. As a six-month-old baby, I had not made any eye contact and my parents and doctors were concerned that I could not see. Which, fortunately, was ruled out. But then came the diagnosis of cerebral palsy. No one could tell my parents whether I would ever learn to walk. We went to see the absolutely amazing MUDr. Sever, who prescribed even more intensive rehabilitation exercises using the Vojta method than those we had been practicing at home. We worked from morning till night; as a result, I could finally sit up. And that got me interested in my surroundings. I’ve always been inquisitive, and my mom says I take after my dad.
When I was a year old, we went to stay at a sanatorium for the first time. I was expecting a stroll on the promenade and walks in the park, some baths maybe, but instead I had to work hard again. One therapist after another took turns on me. In the afternoons, my mom had to make sure she didn’t get out of practice with the Vojta method, so we exercised some more.
This was the way my life started to go – the sanatorium was replaced by rehabilitation, occupational therapy, speech therapy, orofacial stimulation, hippotherapy and so on. Over and over again. I didn’t know how to use a calendar yet, and already my calendar was full.
Today, I’m six years old. I’m a tall, strapping boy for my age. And at first glance, no one would know that I am not like the other boys. In a photo, I look just the same. Unfortunately, I am not. I’m unsteady in my gait, and I don’t understand people very well, so communication is a big problem for me. In addition to auditory neuropathy and cerebral palsy, I have a disorder called semantic-pragmatic communication disorder. That sounds too complicated, so let’s just say that autism has licked me a bit.
I love my family and definitely am the cuddly type. There is boundless love in our home, which makes my brother and I happy kids. Outside the home, I am a good and calm boy who can ask for things and say thank you. I may be bad at pronunciation, but I try my best. Other children don’t care much for me yet… or rather, I don’t care much for them either. Instead, I enjoy playing by myself. My favourite things are sand and modelling clay. And anything that makes sense and is logical – technical stuff. I’ve known the alphabet since I was about two, and I read my first word at four. Today I can read, and I haven’t started school yet. At age five, I discovered that the numbers went on after one hundred and was overjoyed. Recently, I discovered another passion – music. It’s easy for me to understand. I like deep tones, and I also have a fairly decent sense of rhythm. My parents took me to drumming lessons. I pounded away at everything with all my might – but in a way that made sense. And the teacher was thrilled. I’m a hearing-impaired kid with musical hearing – what a hoot, huh?
But why am I telling you all this?
My combination of mild disabilities – cerebral palsy, auditory neuropathy, and semantic-pragmatic communication disorder – has one solution – stem cells. A treatment that can really help me a lot. It probably won’t heal me completely and I may not end up 100% on par with my peers, but my doctors and parents believe I can improve a lot – a lot in every way.
I’m still young, and for some reason there have been malfunctions in my little head that smart stem cells could fix. They’re like little repairmen that can multiply themselves and get to where the problem is and fix it.
It gives us great hope that I could be a pretty normal kid. I don’t really mind wearing a cochlear implant, but I’d love to walk better than I do, though. Not tripping and falling. I’d like to be able to move my hands so I could write and draw. My tongue in my mouth doesn’t know what to do with itself – I wish I could tame and control it. What is most important to me is contact with people. I can’t do that – I can’t hold eye contact, I can’t answer questions, I don’t understand. Something in my little head prevents that. There is a glass wall between me and people – I can see them, but I can’t make contact with them. I wish one day I could find a friend and be able to finally answer the question of how I feel.
With your help, my parents’ biggest dream for me to live a normal and happy life could come true. Thank you for listening to me and thank you in advance if you decide to help me. Stem cell treatment is very expensive, and, what’s more, you have to travel abroad for it.
Thank you again.
Toník
Diagnosis
Dětská mozková obrna (zkráceně DMO) je označení pro soubor nenakažlivých a neprogresivních poruch vývoje motorických oblastí mozku nebo jejich jiné poškození v raném stádiu vývoje, jejichž důsledkem jsou zejména poruchy hybnosti. Mozková obrna je nejčastější poruchou pohybu u dětí.
Sluchová neuropatie (AN) je vzácnou formou ztráty sluchu pozorovanou u některých pacientů, ke které dochází v důsledku přerušení spojení mezi uchem a mozkem. Tito pacienti mají zdravé uši bez fyzických problémů, které by mohly přispět k jejich ztrátě sluchu, ale něco se pokazilo podél sluchových nervů, což ztěžuje slyšení.
Sémanticko-pragmatická porucha (SPD) je vývojová porucha charakterizovaná obtížemi s porozuměním a používáním jazyka. Tento stav je považován za úzce související s autismem a lidé s touto poruchou jsou někdy diagnostikováni s vysoce fungujícím autismem. Děti s touto vývojovou poruchou obvykle získají řečové dovednosti později než jejich vrstevníci, což je klíčový příznak sémanticko-pragmatické poruchy.
Cerebral palsy (CP) is the name given to a set of non-contagious and non-progressive disorders of the development of the motor areas of the brain or their other damage in the early stage of development, which result mainly in mobility disorders. Cerebral palsy is the most common movement disorder in children.
Auditory neuropathy (AN) is a rare form of hearing loss seen in some patients that occurs due to a disruption in the connection between the ear and the brain. These patients have healthy ears with no physical problems that may have contributed to their hearing loss, but something has gone wrong along the auditory nerves, making it difficult to hear.
Semantic pragmatic disorder (SPD) is a developmental disorder characterized by difficulties in understanding and using language. This condition is thought to be closely related to autism, and people with this disorder are sometimes diagnosed with high-functioning autism. Children with this developmental disorder typically acquire language skills later than their peers, a key symptom of semantic pragmatic disorder.
Photos
Funding and treatment
Since the conventional treatment options have long been exhausted, the only thing that could help Toník now is an experimental treatment using so-called mesenchymal stromal cells.
In recent years, many clinical trials have been initiated around the world using the power and ability of cells derived from so-called perinatal tissues (umbilical cord blood and cord tissue) to treat neurological diseases. The cells that have come under the most scrutiny from research teams are mesenchymal cells, which come from the umbilical cord tissue of newborns.
Unfortunately, this experimental treatment is not available in the Czech Republic, so the Pupendo Foundation sought out a clinic abroad that performs cell therapy using mesenchymal cells and has experience with the application for pediatric patients. One of the clients of this clinic is Honzík Šipl, whom we know from the story of the recovery for Honzík and who regularly receives applications of these cells here.
Therefore, I am asking you very much to help me on my way to recovery, for which, in addition to great efforts to fight, to exercise regularly and to undergo many procedures at home and abroad, I lack the amount of 730 000 CZK. With this amount, my parents will pay for the application of stem cells abroad and regular rehabilitation exercises for one year.
We sincerely thank all kind people for helping Tonik in his journey to recovery - not to stagger and fall, to move his hands so that he can write and draw, to tame and control the language he does not want to listen to. What matters most to Tony is contact with people. He can't do that - he can't hold eye contact, he can't answer questions, he can't understand. Something in his little head prevents that. There is a glass wall between him and people - he can see them, but he can't make contact with them. I wish one day I could find a friend and be able to finally answer - how is he.
The fundraising is being held in cooperation with Hitradio City and the Pupendo Foundation. The ceremonial handover of the cheque with the collected amount will take place on 1 December (9 AM) in a live broadcast Hitrádio City with the participation of the parents and little Toník.
I want to help
Send a donation SMS in the form:
DMS ZAROVKA 30 or DMS ZAROVKA 60 or DMS ZAROVKA 90
...to the phone number 87 777
You can also make a donation to the bank account:
Account No. 83297339/0800 Variable symbol 937 and in the note mention "Toník".