Residents of Bolesławiec are asking for help:
We are the parents of 3.5-year-old Maja. Maja is a cheerful and determined girl. Our daughter has a very rare genetic disease—a recessive variant in the NALCN-IHPRF1 gene. IHPRF1 results in severe psychomotor developmental delay, alternating convergent strabismus, malnutrition, gastroesophageal reflux, and an absence of speech development.
As of today, Maja can sit steadily and, when supported, takes steps, but she cannot maintain an upright position independently.
Nevertheless, there is hope. Her parents say:
There is equipment that would allow Maja to take steps independently. To give our child a taste of normality, we would like to purchase an NF-Walker.
We believe this is the ideal equipment for Maja. The NF-Walker is a device individually fitted to the patient, giving the user the ability to stand and walk independently.
They add:
The obstacle preventing us from purchasing the equipment is its price. It costs more than PLN 34,000. The cost exceeds our financial means. Unfortunately, we did not receive funding, so we decided to set up a fundraiser: https://zrzutka.pl/nnpwrz.
And they appeal:
We ask everyone to support us in the fight for Maja’s independence. Thank you very much for every bit of help!
Maja’s parents
Magdalena and Grzegorz Kozioł