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