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!!!

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 ❤️❤️❤️

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 ❤️❤️❤️

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 etc

Since 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

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 !!! ❤️❤️❤️🙏🏻🙏🏻🙏🏻

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

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