"...Who knows what a good thing may happen to a man during his short life that passes by quickly?..."
A few words about Maja
Summer 2004
I am a mother of the 4 years old Maja suffering from metachromatic leucodystrophy. It is a rare inherited disorder. As a the white matter of the brain fades away. It affects human motor activity and a loss of nerves in a human body.
Until the 10 month of her life, Maja's development was correct. She crawled on all fours, walked holding pieces of furniture. Unfortunately, at that age, her feet started to become out of shape and physically floppy.
July 2005
In September 2004 we started to make Maja undergo rehabilitation and search for the cause of her deteriorating condition.
The examinations (tomograph, EEG) did not reveal the cause. The doctors misdiagnosed infantile cerebral palsy. Suddenly in March 2005 Maja's motor skills did not progress as expected and the skills that had been learnt were lost. Within two weeks our daughter was neither able to stand nor to crawl on all fours nor even to sit on her own .
July 2005
A neurologist said that it was the so-called progressing encephalopathy lopathy and he sent us to the Lower Silesian Medical Center of Mother and Child in Katowice where Maja was diagnosed.
In May 2005 the Warsaw Institute of Genetics confirmed the diagnosis and both I and my husband turned out to be the carriers of the disease. WWithin two months Maja stopped being able to talk. She was unable to sit down even while being held.
October 2005
Since October 2005 our daughter had more and more serious problems with swallowing - at present we are feeding her with a use of a tube. At the beginning of December, Maja underwent an operation in Zabrze (gastrostomy). Its aim was to connect a "peg" i.e. a special tube connected directly to the stomach. At the moment Maja feels a little better. The stitches have been removed and her organism slowly adapts to the new way of absorbing food .
November 2005
On 2 November 2005 Maja had the first epileptic fit with an unusual loss of consciousness. In December she had another epilepsy fit with some convulsions.
Unfortunately, there is no cure for the disease. Only rehabilitation and specialist equipment may allow to keep Maja at a certain stage of development though unfortunately there is a progress of the disease.