Hi everyone! I’m Csilla, Nelli’s mum🙂

My little girl was born with Mowat-Wilson syndrome, which is a very rare genetic condition (around 500 diagnosed cases worldwide); it cannot be cured, but Nelli’s quality of life can be improved with the right treatments.

The main symptoms of the condition in Nelli’s case are:

• Hirschsprung’s disease (a bowel condition)
• Absence of the corpus luteum
• Congenital spleen deficiency
• Heart disease
• Delayed motor development
• Delayed speech development

He already had an operation at two weeks old, when the section of intestine without innervation was removed, and he is due to have heart surgery this September.

We currently take him to three different places for various sessions (neuro-hydrotherapy, one week of intensive therapy with a conductor each month, and physiotherapy once a week); these cost nearly 150,000 forints a month.

We are still able to provide everything for her at the moment, but soon I will only be receiving maternity leave pay, and then our situation will become more difficult.

Thank you for contributing, even if only a little, to Nelli’s development! ❤️