Our life with a rare genetic disease

Besides “regular” physiotherapy, we took few intensive weeks of Vojta therapy twice a year for more than two years. Can only recommend. At least as a supplementary, if not as the main therapy. Very useful! Especial for very small children with central motor disorders. The earlier you start, the better consequences on the development it has.  It helped us very much. ALWAYS,  after such intensive time "with Vojta", we made a huge step forward in the development. And it was seen in very short time after. This method, however, requires from the parent/caregiver a lot of time. That the whole method makes sense, it needs to be done few times per DAY, 3-4 times. Each sessions takes only about 20 min. You must also believe in it, it helps motivating. Only by persistence and repetition you will be successful! More information can be found here: https://www.vojta.com/en/the-vojta-principle/vojta-therapy/fundamentals .  

... or this time in a therapy pool ;-) We are in the water almost weekly, and it took us two long years to realize we can use legs in the water! How cool is that! There is sooo much more fun by using also legs, not only hands! We use swimming also for fine motor activities, e.g. by collecting anything what we find from the water surface. Water, as an element, is a great therapy for anybody, not only for children with hypotonia or Bainbridge-Ropers syndrome, who just simple love water. The dark side of this nice hobby is that we get easily cold. We try to fight against it by using wetsuit. Most of the time we are successful. "Swimming" helped us very much in improving gross motor skills, and to get there where we are now = we are walking! It brought a lot of freedom to both, mom and little one.

.... although we walk only for 8 months! Because we use DAFO orthotics, we bought skis, which can be used with the winter shoes, not ski boots, as those are usually pretty narrow and could not be wear over DAFO. The skis are very light and easy to adjust and put on.  Skates have not been used yet! But they are ready to be used!

Our home-made sensory "rug"