Lotta was born with PIGN-CDG
Our daughter Lotta was born with an extremely rare genetic disorder known as PIGN-CDG, which is a type of a group of inherited metabolic diseases called Congenital Disorders of Glycosylation (CDG). There are fewer than 100 known children affected globally, but as genetic testing becomes widespread, more and more cases are identified each year. Nearly all children with PIGN-CDG experience neurological and developmental delays, severe muscle tone disorders and seizures.
In the beginning we thought Lotta is a healthy child, but she started to have seizures with three months. The developmental delays were obvious when she was about half a year. In 2020 she was diagnosed with PIGN.
Lotta was seven months old when we started with therapies like Voita, PT, OT, etc. but couldn’t see much progress. Doctors told us that there won’t be much of success, sentences you don’t want to hear as parents. We continued to find a therapy or a method which would suit for Lotta and a method she would feel comfortable with.
Looking for a new therapy for Lotta –
The Anat Baniel Method
The method which helped Lotta the most, is the
Anat Baniel Method (ABM).
Ever since we took lessons and intensives Lotta improved her motor skills, her walking and her cognitive functions. So when I learned about Sylvia Leiner Shordike’s (former ABM practitioner and founder of NeuroHorizons® and Kerstin Baldischwieler (founder of NeuroScanBalance®) premier movement training program in Europe I took the chance to do the professional training – to help Lotta and maybe even others.