Marie leeft met een zeldzame ziekte
Jij kunt haar helpen bij haar ontwikkeling
EN, FR ⬇️
Marie werd geboren op Valentijnsdag. Ze was volkomen perfect, maar al na enkele dagen liep het mis. Acht dagen na haar geboorte werd ze in een ziekenwagen met stuipenovergebracht naar spoed. Daar zou de diagnose ‘epilepsie’ luiden. De aanvallen raakten niet onder controle met medicatie en we maakten ons grote zorgen.
Toen ze twee maanden oud was, kregen we het resultaat van de genetische analyse: een mutatie in het gen STXBP1. Deze genetische afwijking werd in 2008 ontdekt en treft zo’n 800 mensen wereldwijd.
Neurologen voorspelden dat ze nooit een zelfstandig leven zou kunnen leiden, niet zou kunnen praten, een zware mentale achterstand zou hebben en dat ook de motorische ontwikkeling problematisch zou verlopen. Een behandeling bestaat op heden niet, enkel revalidatie is mogelijk, maar de klassieke geneeskunde biedt momenteel geen enkele methode die iemand kan helpen bij wie de hersenen niet goed functioneren.
Wij hebben dagelijks informatie verzameld uit uiteenlopende bronnen en van andere ouders van bijzondere kinderen die al behoorlijke resultaten geboekt hadden en we hebben verschillende cursussen gevolgd. Uit dit alles ontstond een combinatie van therapieën die elkaar aanvullen. In enkele landen, zoals in Denemarken en Nederland, wordt de kostprijs daarvan gedekt door de ziekteverzekering. In België is dat niet het geval.
Wij hebben geen spaargeld, geen huis dat we kunnen verkopen of rijke familie die kan helpen. Daarom werken wij ons het jaar door uit de naad. Mijn man combineert twee banen en zelf geef ik privéles piano.
Aangezien Maries ziekte nog maar weinig bestudeerd is, hoopten wij tot het laatste ogenblik dat ze op de leeftijd van één jaar niet zo veel ontwikkelingsachterstand zou hebben en dat onze inspanningen voldoende zouden zijn. Helaas is haar achterstand heel groot, wat betekent dat ze een intensievere revalidatie nodig heeft.
Elke week overleggen we met revalidatieartsen, neurologen en artsen die gespecialiseerd zijn in de ontwikkeling van kinderen uit verscheidene landen. De revalidatie van Marieneemt drie uur per dag in beslag en het revalidatieprogramma wordt steeds aangepast en uitgebreid.
Bovendien neemt Marie veel supplementen en enkele medicijnen om haar fysieke gezondheid te verbeteren en de epileptische aanvallen onder controle te houden.
Onze inspanningen worden beloond, maar we moeten er steeds meer leveren.
Omwille van financiële beperkingen moeten we elke maand kiezen aan welk onderdeel van Maries therapie we budget besteden, terwijl alle onderdelen even belangrijk zijn. Nu Marie één jaar geworden is, zijn er verschillende therapieën mogelijk die voordien afgeraden werden omwille van haar leeftijd. Er is steeds meer tijd en geld nodig. Momenteel hangt de mate waarin zij in de toekomst kan ontwikkelen, af van onze investeringen. Voor een aantal oefeningen moeten er vrijwilligers naar ons toe komen omdat we daarvoor met drie moeten zijn. Deze mensen rijden met ons mee naar de oefensessies bij de revalidatiearts om alle oefeningen nadien correct te kunnen uitvoeren. Hen moeten wij ook vergoeden. Ook zijn er ingewikkelde oefeningen die alleen ik kan doen omdat ik hiervoor een speciale opleiding heb gevolgd, waardoor ik niet meer zo veel kan werken als vroeger.
Om al deze redenen vragen wij om jouw hulp, zodat Marie op tijd de nodige therapie kan volgen.
Jij kunt helpen door een bedrag naar keuze te storten, maar ook door Maries verhaal te delen via jouw sociale netwerken en daarbij te verwijzen naar deze geldinzameling.
Deze therapieën volgt Marie momenteel:
Advanced biomechanical rehabilitation
Anat Baniel-methode
Zintuiglijke revalidatie
Doman-methode
Motorische ontogenese
Nutraceutische therapie
Osteopathie
Kinesitherapie
Geplande therapieën:
Tomatis-luistertherapie
Hydrotherapie
Hirudotheratpie
Acupunctuur
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Help Marie with a pathogenic genetic mutation to grow and thrive
Marie was born on Valentine's Day and was a picture of perfection. But after a few days, problems began to arise. When she was eight days old, she started having seizures and had to be taken to the hospital by ambulance. She was diagnosed with epilepsy. no medication seemed to be able to stop her seizures, causing immense stress for us.
Two months after Marie's birth, we received the results of a genetic test which showed a pathogenic mutation in the stxbp1 gene. This rare genetic disorder was first discovered in 2008 and affects only about 800 people worldwide.
Marie's neurological forecast included absence of speech,severe intellectual disability, multiple motor disorders. We were informed that she would never be able to live independently. No cure is currently available for this genetic disorder, and conventional medicine has yet to develop therapies that can help patients with a malfunctioning brain.Only some rehabilitation programs are possible.
Every day we gathered information from different sources, spoke with parents of children with special needs who had achieved impressive results, and enrolled in various courses. We ultimately built up a system of complementary therapies. While some countries, such as Denmark and the Netherlands, reimburse these therapies through health insurance, in Belgium, they are not covered.
Our family has no savings, no property to sell, nor wealthy relatives to support us financially. For more than a year, my husband has been juggling two jobs, while I have been teaching piano lessons.
As Marie's condition is not well understood, we hoped our efforts would be sufficient and that by the time Marie turned one, her developmental delay would not be severe. Unfortunately, that was not the case, and she requires more intensive rehabilitation.
Every week, we consult with rehabilitation therapists, neurologists, and child development specialists from different countries. Our daily routine now involves three hours of special exercises with Marie, and her program is constantly evolving and expanding.
Marie also takes various supplements and medication to improve her physical health and help control her epileptic seizures.
While we can see that our efforts are paying off, much more needs to be done.
Although all of Marie's therapies are essential, due to financial constraints, we are forced to choose which ones we can afford each month. Now that Marie is one year old, we can begin some therapies that were previously contraindicated because of her age. The rehabilitation is taking up more and more of our time and money. But the more we can invest now, the better Marie's chances will be for the future. Some exercises require three adults, so we need volunteers to assist. They also have to accompany us to rehabilitation therapists to learn how to properly perform the exercises, and we have to pay them. Additionally, some difficult exercises require specialized training that only I have received. They are taking up a significant amount of my time, making it difficult for me to work as hard as I used to.
That's why we are reaching out to you for help so that Marie gets the therapy she needs on time.
Any financial contribution you can make would be much appreciated. You can also help us by sharing Marie's story on your social networks to help us raise more money.
Currently, Marie is receiving the following therapies:
Advanced Biomechanical Rehabilitation
Anat Baniel Method
Sensory Rehabilitation
Doman Method
Motor Ontogeny
Nutraceutical Therapy
Osteopathy
Kinesitherapy
We also plan to pursue the following therapies in the future:
Tomatis
Hydrotherapy
Hirudotherapy
Acupuncture
**************************************
Marie, porteuse d’une mutation génétique pathogène, abesoin de votre aide
Marie est née le jour de la Saint-Valentin et semblait parfaite. Malheureusement, quelques jours après des problèmes ont commencé. Âgée de huit jours, elle a eu ses premières crises épileptiques et a dû être transportée à l’hôpital en urgence. Épilepsie a été diagnostiquée, mais aucun médicament ne semblait pouvoir l’aider, ce qui nous a causé un stress immense.
Deux mois après, les résultats d’un test génétique sont arrivés, qui ont révélé une mutation pathogène du gène stxbp1. Cette maladie génétique rare a été découverte en 2008 et ne touche qu’environ 800 personnes dans le monde.
Ces personnes souffrent de mutisme, d’handicap mental sévère et de multiples troubles moteurs. Médecins ont ditqu’elle ne pourrait jamais vivre de façon autonome. Il n’existe actuellement aucun traitement pour cette maladie génétique et la médecine conventionnelle n’a pas encore mis au point de thérapies susceptibles d’aider ces patients. Seuls quelquesprogrammes de réhabilitation sont possibles.
Nous avons donc dû chercher des thérapies complémentaires pour Marie. Bien que certains pays, comme le Danemark et les Pays-Bas, les remboursent, en Belgique, elles ne sont pas prises en charge par la sécurité sociale.
Notre famille n’a pas d’épargne, pas de biens à vendre, ni de parents riches pour nous soutenir financièrement. Mon mari combine actuellement deux emplois, tandis que je donne des cours de piano pour subvenir à nos besoins.
Nous avons passé beaucoup de temps à recueillir toutes les informations disponibles sur cette maladie, parlé avec des parents d’enfants ayant des besoins particuliers qui avaient démontré des améliorations impressionnantes et suivi différents cours afin de mettre en place un système de thérapies complémentaires pour Marie. Chaque semaine, nous consultons des thérapeutes, des neurologues et des spécialistes du développement de l’enfant de différents pays.
Chaque jour, nous faisons des exercices spécialisés avec Marie pendant au moins trois heures, et leur nombre augmente constamment. Elle prend aussi des suppléments divers et des médicaments pour améliorer son état physique et aider à contrôler ses crises d’épilepsie. Bien que nous puissions constater que nos efforts portent leurs fruits, il reste encore beaucoup à faire.
Cependant, bien que tous les traitements soient nécessaires, en raison de contraintes financières nous sommes obligés à n’en choisir que quelques-uns. Maintenant qu’elle a un an, nous pouvons enfin commencer certains soins qui étaient contre-indiqués avant en raison de son âge. Sa réhabilitation nous prend de plus en plus de temps et d’argent. Nous avons besoin de bénévoles pour nous aider. Ils doivent parfois nous accompagner chez des réhabilitologues pour apprendre à effectuer correctement les exercices, et nous devons les rémunérer. En outre, certains exercices difficiles nécessitent une formation spécialisée que je suis la seule à avoir reçue. Ils me prennent beaucoup de temps, ce qui m’empêche de travailler aussi dur qu’avant.
C’est pourquoi nous faisons appel à vous pour nous aider à donner à Marie tout le traitement dont elle a besoin.
Toute contribution financière serait très appréciée. Vous pouvez également nous aider en partageant l’histoire de Marie sur vos réseaux sociaux pour nous aider à récolter plus d’argent.
À l’heure actuelle, Marie reçoit les thérapies suivantes :
Réhabilitation biomécanique avancée
Méthode Anat Baniel
Rééducation sensorielle
Méthode Doman
Ontogénie motrice
Thérapie nutraceutique
Ostéopathie
Kinésithérapie
Dans l’avenir nous voulons également poursuivre les thérapies suivantes :
Tomatis
Hydrothérapie
Hirudothérapie
Acupuncture
Help Marie with a pathogenic genetic mutation to grow and thrive
Marie was born on Valentine's Day and was a picture of perfection. But after a few days, problems began to arise. When she was eight days old, she started having seizures and had to be taken to the hospital by ambulance. She was diagnosed with epilepsy. no medication seemed to be able to stop her seizures, causing immense stress for us.
Two months after Marie's birth, we received the results of a genetic test which showed a pathogenic mutation in the stxbp1 gene. This rare genetic disorder was first discovered in 2008 and affects only about 800 people worldwide.
Marie's neurological forecast included absence of speech,severe intellectual disability, multiple motor disorders. We were informed that she would never be able to live independently. No cure is currently available for this genetic disorder, and conventional medicine has yet to develop therapies that can help patients with a malfunctioning brain.Only some rehabilitation programs are possible.
Every day we gathered information from different sources, spoke with parents of children with special needs who had achieved impressive results, and enrolled in various courses. We ultimately built up a system of complementary therapies. While some countries, such as Denmark and the Netherlands, reimburse these therapies through health insurance, in Belgium, they are not covered.
Our family has no savings, no property to sell, nor wealthy relatives to support us financially. For more than a year, my husband has been juggling two jobs, while I have been teaching piano lessons.
As Marie's condition is not well understood, we hoped our efforts would be sufficient and that by the time Marie turned one, her developmental delay would not be severe. Unfortunately, that was not the case, and she requires more intensive rehabilitation.
Every week, we consult with rehabilitation therapists, neurologists, and child development specialists from different countries. Our daily routine now involves three hours of special exercises with Marie, and her program is constantly evolving and expanding.
Marie also takes various supplements and medication to improve her physical health and help control her epileptic seizures.
While we can see that our efforts are paying off, much more needs to be done.
Although all of Marie's therapies are essential, due to financial constraints, we are forced to choose which ones we can afford each month. Now that Marie is one year old, we can begin some therapies that were previously contraindicated because of her age. The rehabilitation is taking up more and more of our time and money. But the more we can invest now, the better Marie's chances will be for the future. Some exercises require three adults, so we need volunteers to assist. They also have to accompany us to rehabilitation therapists to learn how to properly perform the exercises, and we have to pay them. Additionally, some difficult exercises require specialized training that only I have received. They are taking up a significant amount of my time, making it difficult for me to work as hard as I used to.
That's why we are reaching out to you for help so that Marie gets the therapy she needs on time.
Any financial contribution you can make would be much appreciated. You can also help us by sharing Marie's story on your social networks to help us raise more money.
Currently, Marie is receiving the following therapies:
Advanced Biomechanical Rehabilitation
Anat Baniel Method
Sensory Rehabilitation
Doman Method
Motor Ontogeny
Nutraceutical Therapy
Osteopathy
Kinesitherapy
We also plan to pursue the following therapies in the future:
Tomatis
Hydrotherapy
Hirudotherapy
Acupuncture
Marie, porteuse d’une mutation génétique pathogène, abesoin de votre aide
Marie est née le jour de la Saint-Valentin et semblait parfaite. Malheureusement, quelques jours après des problèmes ont commencé. Âgée de huit jours, elle a eu ses premières crises épileptiques et a dû être transportée à l’hôpital en urgence. Épilepsie a été diagnostiquée, mais aucun médicament ne semblait pouvoir l’aider, ce qui nous a causé un stress immense.
Deux mois après, les résultats d’un test génétique sont arrivés, qui ont révélé une mutation pathogène du gène stxbp1. Cette maladie génétique rare a été découverte en 2008 et ne touche qu’environ 800 personnes dans le monde.
Ces personnes souffrent de mutisme, d’handicap mental sévère et de multiples troubles moteurs. Médecins ont ditqu’elle ne pourrait jamais vivre de façon autonome. Il n’existe actuellement aucun traitement pour cette maladie génétique et la médecine conventionnelle n’a pas encore mis au point de thérapies susceptibles d’aider ces patients. Seuls quelquesprogrammes de réhabilitation sont possibles.
Nous avons donc dû chercher des thérapies complémentaires pour Marie. Bien que certains pays, comme le Danemark et les Pays-Bas, les remboursent, en Belgique, elles ne sont pas prises en charge par la sécurité sociale.
Notre famille n’a pas d’épargne, pas de biens à vendre, ni de parents riches pour nous soutenir financièrement. Mon mari combine actuellement deux emplois, tandis que je donne des cours de piano pour subvenir à nos besoins.
Nous avons passé beaucoup de temps à recueillir toutes les informations disponibles sur cette maladie, parlé avec des parents d’enfants ayant des besoins particuliers qui avaient démontré des améliorations impressionnantes et suivi différents cours afin de mettre en place un système de thérapies complémentaires pour Marie. Chaque semaine, nous consultons des thérapeutes, des neurologues et des spécialistes du développement de l’enfant de différents pays.
Chaque jour, nous faisons des exercices spécialisés avec Marie pendant au moins trois heures, et leur nombre augmente constamment. Elle prend aussi des suppléments divers et des médicaments pour améliorer son état physique et aider à contrôler ses crises d’épilepsie. Bien que nous puissions constater que nos efforts portent leurs fruits, il reste encore beaucoup à faire.
Cependant, bien que tous les traitements soient nécessaires, en raison de contraintes financières nous sommes obligés à n’en choisir que quelques-uns. Maintenant qu’elle a un an, nous pouvons enfin commencer certains soins qui étaient contre-indiqués avant en raison de son âge. Sa réhabilitation nous prend de plus en plus de temps et d’argent. Nous avons besoin de bénévoles pour nous aider. Ils doivent parfois nous accompagner chez des réhabilitologues pour apprendre à effectuer correctement les exercices, et nous devons les rémunérer. En outre, certains exercices difficiles nécessitent une formation spécialisée que je suis la seule à avoir reçue. Ils me prennent beaucoup de temps, ce qui m’empêche de travailler aussi dur qu’avant.
C’est pourquoi nous faisons appel à vous pour nous aider à donner à Marie tout le traitement dont elle a besoin.
Toute contribution financière serait très appréciée. Vous pouvez également nous aider en partageant l’histoire de Marie sur vos réseaux sociaux pour nous aider à récolter plus d’argent.
À l’heure actuelle, Marie reçoit les thérapies suivantes :
Réhabilitation biomécanique avancée
Méthode Anat Baniel
Rééducation sensorielle
Méthode Doman
Ontogénie motrice
Thérapie nutraceutique
Ostéopathie
Kinésithérapie
Dans l’avenir nous voulons également poursuivre les thérapies suivantes :
Tomatis
Hydrothérapie
Hirudothérapie
Acupuncture
Updates
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on 6/12/24
Dear friends,
It is with great joy that I want to report that Marie is doing well!
As I told you before, in March we started Ravicti medication, which has had significant results in epilepsy reduction and development.
In addition, over the last few months we have added several touches to Masha's therapy, especially nutraceuticals, which have made the progress even faster and more noticeable!
Masha is now crawling up to 50 metres a day on her stomach, lifting her pelvis each time and keeping a little on her knees. She's also starting to hold a sitting position. True only for a few seconds, but that hadn't happened as recently as last week.
Her speech comprehension has made a huge leap. She responds to different suggestions of activities and games, gives an arm and a leg when asked and actively helps dress herself.
Now it is very important for us to continue her therapy, because only comprehensive work gives noticeable results.
In just a week and a half we are on our way to Tomatis therapy for almost a month! We expect big changes during this time. We are still about 2,000€ short to implement the plan.
If anyone else would like to help Marie, it would be very timely and we will accept help with great gratitude!
We will have charity concerts in autumn, if you want to see more about Marie, subscribe or add me as a friend on Facebook (Ksenia Ovodova). I will be very happy to everyone!
Thank you!!!
-
on 3/26/24
Dear friends,
It's been a long time since I've written anything here. First a brief update on what has happened from the summer to now.
Over the summer, Marie was allowed to gradually withdraw one of her antiepileptic medications. I now know that the classic cancellation scheme almost never works and you have to do everything at least three times slower. So the effects of the cancellation were horrible, Marie's seizures increased and were constant, every day many times. In October we had to bring back the cancelled medication at an increased dosage. Since October, Marie has stopped smiling... and has only laughed once in those months. Unfortunately, that's how epilepsy drugs work, and the old medication didn't do much to reduce the seizures. But over time the combination of several different methods worked and the seizures became less frequent.
All the time, except for the days when Marie was unwell, we were exercising with her. The main therapy with many different programmes related to mobility, cognitive development, breathing, nutrition is the Doman Method and we do it every day. We also regularly go to Tomatis Therapy, which activates Marie and multiplies all her skills.
Probably the biggest news so far is the start of a new drug (Ravicti) that has been tested for people with this genetic condition. I knew that for some children it worked wonders and for some it had little or no effect. It was very exciting.
And...the medicine is working! We started three weeks ago and have noticed small changes since the first few days.
The next task we need to do is to find the money for this medicine. Right now it costs 1500€ a month, as Marie grows, more medicine will be needed. The worst news lately is that we have been completely denied a refund by our insurance, reasoning that there is not enough research yet on the effect on this gene. We continue to look for new ways. If any of you have any ideas, you can always message me on Facebook (Ksenia Ovodova) or instagram @ksovodova. It would help us if we could get Marie's story in the news and newspapers. But no one answered me from the journalists.
Thank you so much for your help and financial support. Thanks to you we are moving forward ❤️❤️❤️
-
on 3/26/24
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on 11/14/23
Hello dear friends,
First of all I would like to thank everybody who has helped us so far, we do everything with our own hands, but with your financial support ??
We had a tough time almost for 4 months long. Marie’s epilepsy got very active from mid July and we couldn’t get her seizures under control. It slowed down her progress and we almost couldn’t practice with her.
Despite this situation she has still progressed in the development in many areas.
In October we went to the Doman Institute in Italy for the second time and received a new program for 6 months.
In November we came for the evaluation and new training of Advanced biomechanical rehabilitation. The changes in her body are so exciting and the whole ABR team said that it’s rather a progress in two years, not just a year! (See photos).
Now we are back to her regular exercises with crawling, hanging, reading from the Doman Method and so many others from the ABR.
We practice about 4 hours a day and start the program right after she wakes up. We have a luck that Marie likes most of the exercises and for some of them we are forced to be inventive and keep her motivated ;))
Soon we start with a new medication (Phenylbutyrate) which could help Marie’s gene to work better. Unfortunately it is very expensive (now for her weight 1500€ a month) and the insurance doesn’t pay anything back…
Here is our financial update:
8000€ Doman Institute
2500€ Evaluation and training ABR
350€ consultations
250€ supplements and medications
200€ materials for therapies
500€ volunteers for Marie’s exercises
Thank you so much ❤️❤️❤️
- on 11/14/23
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on 8/7/23
Hello dear friends!
I want to share our news and write a financial update of the last months. In the last periode Marie has been progressing very well. At this moment we are doing several therapies at home ourselves and several with specialists.
Every morning we begin with different programs from the Doman method: breathing enhancement program, tactile integration, cognitive and mobile development programs. Between these exercises we are doing the Advanced biomechanical rehabilitation.
We also have great results with the last method I learned: Dir/Floortime where Marie is learning new things through emotional contact between us and games. Also, nutrition is one of the most important parts for her brain development: she has to be lifelong on a special diet and she takes many supplements to support her health and give nutrition to her brain. The therapies we cannot do at home are ABM (Anat Baniel Method), Tomatis and other specialists like osteopath, chiropractor etcSince the last update we have been twice to Tomatis therapy. Every time she makes a visible step forward after 6 days of the therapy.
Now we are fundraising first of all for Marie’s next visit to the Doman Institute in Italy (their European camp). The first visit where they designed her program for 6 months was one of our best decisions!
As a professional pianist I believe first of all in the daily routine, and this is exactly what they can offer. Marie not only made a huge progress in mobile and cognitive development, but she also loves her Doman program very much! So we do not have any exercise which she would hate or which could harm her (this happens in the most cases with families who are trying to help their kid with special needs). Now she has reached her 6 months goals which the Doman team set (so she is 3 months ahead). She started to crawl on the floor, taking more and different objects, supporting her body on the straight arms. She shows a big improvement with her head control. One of her favourite parts of the program is looking at the flesh cards with words, this is difficult to believe but from the 70-years long experience of the Doman institute they are absolutely sure she will be able to read in different languages.
Her progress is very exciting and we are so proud of our little girl ? it is also motivating to keep doing the program.
Our next visit is supposed to be in October. Currently we need to fundraise around 6500€ to make it happen.
We thank all of you very much for your help, we could never imagine so many people would feel compassion for our situation and wanted to help Marie to develop in the best possible way. Thank you !!!
Beside the financial help you can always support us by sharing our story with the link to the fundraising (if you want to share it on Facebook, it is better to put the link in the comments below your post because Facebook hides all the posts with external links so just a few friends will see it).
Here are our costs for the last months:
2000€ Tomatis therapy (2 times)
500€ Anat Baniel Method
400€ appointments with specialists
525€ medical costs
380€ materials for therapies
300€ volunteers who help to do some of Maries exercises
- on 8/7/23
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on 6/1/23
Hello dear friends,
I am here to share with you how Marie is doing and also to give information about our costs.
It’s been one month since we came back from Italy where we met with the Doman institute. We immediately started the new program. Marie has already reached her goal for the mobile development which was set for 6 month! She started to crawl on the inclined floor. It will take some time till she can transfer it to just the floor.
She also has many new emotional nuances and she loves music and to “play” the piano more than anything else! This is why we ate beginning a year course music therapy combined with the Dir/floor time.
Today we are going for the second time Tomatis therapy for 6 days. We are looking very much to it!
Also this month Marie gets 6 sessions Anat Baniel therapy and there is also a new training planned for the Advanced biomechanical rehabilitation.
Here is an overview of our costs:
615€ supplements, medications and costs of Marie’s special diet
233€ materials for therapies
635€ medical visits, consultations
1300€ therapies
Thank you very much for your help dear friends !!! ❤️❤️❤️??????
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on 4/25/23
Dear friends,
we have just come back from Italy, where we went for our appointment with Doman Institute. This was the most important and exciting happening for us and Marie so far.
The team of the institute examined Marie’s development in all the aspects and gave us some good news and a hope.
Apparently, Marie’s understanding is at the level of her age, though there should be much work done for her mobile development…
The neurologist is sure Marie will walk one day, we hope it so much.
The trip to Italy would never happen without your support, we are so grateful to every person who helped us financially and by sharing Marie’s story on the social media!
The total cost of the trip was 7150€
I also see that the video in the previous update doesn’t show up, although I see it when I edit the update. You can look at it on my YouTube page: Ksenia Ovodova.
thank you again!!!
Ksenia, Ricky and Marie
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on 4/19/23
Dear friends,
thanks to your donations Marie could go for her first time 10 days of Tomatis therapy!
it was very exciting because we didn’t know what to expect. But finally, it is like the therapist said: Marie is now much more ‘awake’, she started doing new things, has more interest in the environment and shows her character more often ;))
the total cost of the therapy was 1600€
please watch a video of her daily therapy routine!
we thank everyone from the bottom of our hearts!!!
Ksenia, Ricky and Marie
Fundraiser organised by:
Ksenia Ovodova
Donations
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Greta Mustafaraj €50.00on 7/10/25
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Anonymous €20.00on 6/3/25
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Anonymous €300.00
Добра, света и здоровья
on 4/19/25 -
Anonymous €200.00on 4/4/25
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Olesia Kunitsyna €100.00
Машеньке на лечение.
on 3/11/25
