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 ❤️❤️❤️